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Abducted Children

• Both Parents Forever
• REUNITE (International Child Abduction Centre)
• Further Reading

Abortion

• see under Pregnancy

Abuse

• Abuse Survivors
• Action on Elder Abuse (Elderly Abuse)
• National Association for People Abused in Childhood
• TANSAL (The Abuse Network Survivor Aid Links)
• Voice UK
• Further Reading (elderly abuse)
• Further Reading (child abuse)
• Further Reading (survivors of abuse)

Achondroplasia

• see under Growth

Acne & Rosacea

• Skincell International
• Further Reading

Acoustic Neuroma

• BANA (British Acoustic Neuroma Association)
• AMNET (Acoustic Neuroma & Meningioma Network)
• Further Reading

Acromelagy

• contact Pituitary Foundation under Pituitary Disorders

Acute Anxiety Disorder

• see under Phobia

Acute Idiopathic Polyneuritis

• contact GBS Support Group under Guillain-Barre

Addison's Disease

• Addison's Disease Self Help Group
• Further Reading

Additives

• Additives Survivors Network

Adenomyosis

• contact Pelvic Pain Support Network under Pelvic Pain

Adhesions

• The UK Adhesions Society
• Further Reading
• also contact Pelvic Pain Support Network under Pelvic Pain

Adipogenital Syndrome

• contact LMBBS under Laurence-Moon-Bardet-Beidl Syndrome

Adoption and Fostering/Adopted Adults/Natural Parents

• Adoption UK
• BAAF Adoption and Fostering
• Be My Parent
• Forever Family
• Fostering Network
• Natural Parents Network
• NCH Action for Children
• NORCAP
• Post Adoption Centre
• TALK adoption
• Further Reading

Adoption from Abroad

• AFAA
• OASIS (Overseas Adoption Support Information Service)

Adrenoleukodystrophy/Adrenomyeloneuropathy

• ALD Life
• Further Reading (Adrenoleukodystrophy)
• Further Reading (Schilder's Disease)
• see also under Leukodystrophy

Agammaglobulinaemia X-Linked

• contact Primary Immunodeficiency Association under Immune Deficiency Syndromes

Agenesis of the Corpus Callosum

• CORPAL
• Further Reading

Agoraphobia

• see under Phobia

Agyria

• contact Lissencephaly Contact Group under Lissencephaly

Aicardi Syndrome

• CORPAL
• Further Reading

AIDS

• see under HIV
• Further Reading

Alagille Syndrome

• contact Children's Liver Disease Foundation under Liver

Albinism

• Albinism Fellowship
• Further Reading

Alcohol Related Problems

• Al-Anon Family Groups
• Alcoholics Anonymous
• Alcohol Concern
• Alcohol Problems Advisory Service
• ARP
• Institute of Alcohol Studies
• National Association for Children of Alcoholics
• TACADE (The Advisory Council on Alcohol And Drug Education)
• Hypnosis Help
• Further Reading

Alexander Disease

• see under Leukodystrophy

Allergy

• Action Against Allergy (AAA)
• Anaphylaxis Campaign
• Allergy UK
• British Institute for Allergy and Environmental Therapy
• Further Reading (Allergy)
• Further Reading (Anaphylaxis)

Alopecia

• Alopecia UK
• Hair Loss UK
• Further Reading

Alpers Disease

• contact Children's Mitochondrial Disease Network under Mitochondrial Disease

Alpha 1 - Antitrypsin Deficiency

• Further Reading

Alpha Thalassaemia

• ATR-X Support Group
• Further Reading

Alstrom Syndrome

• Alstrom Syndrome UK

Alternating Hemiplegia

• Alternating Hemiplegia
• Further Reading

Alzheimer's Disease

• Alzheimer's Society
• Further Reading (Alzheimer's)
• Further Reading (Vascular Dementia)

Amputation

• contact Limbless Association and BLESMA under Disability

Amsterdam Dwarfism

• contact Cornelia de Lange Syndrome Foundation under Cornelia de Lange Syndrome

Amyolasia Congenita

• contact TAG (The Arthrogryposis Group) under Arthrogryposis

Amyotrophic Lateral Sclerosis

• contact Motor Neurone Disease Association under Motor Neurone Disease

Anaphylaxis

• contact Anaphylaxis Campaign under Allergy

Andersen Syndrome

• contact Association for GSD under Glycogen Storage Disease

Anderson-Fabry Disease

• contact Fabry's Disease Support Group under Fabry's Disease

Androgen Insensitivity

• Androgen Insensitivity Syndrome Support Group
• Further Reading

Anencephaly

• contact ASBAH under Spina Bifida

Aneurysm

• contact Circulation Foundation under Vascular Disease

Angelman Syndrome

• ASSERT
• Further Reading

Ankylosing Spondylitis

• National Ankylosing Spondylitis Society
• Further Reading

Anorchidism/Anorchia

• Anorchidism Support Group

Anopthalmia

• contact MACS under Micropthalmia

Anorexia

• contact Eating Disorders Association and SWEDA under Eating Disorders

Anticoagulation

• Anticoagulation Europe
• Further Reading

Aperts Syndrome

• contact Headlines (Craniofacial Support) under Craniofacial

Aphasia

• SpeakAbility
• also Stroke Association under Stroke
• also Chest Heart and Stroke Scotland under Heart
• Further Reading (Aphasia)
• Further Reading (Dysphasia)

Aplastic Anaemia

• Aplastic Anaemia Trust
• also contact Leukaemia CARE under Leukaemia
• Further Reading

Arachnoiditis

• ANPHIS
• Further Reading

Armed Forces (serving and ex)

• At Ease
• also Ex-Services Mental Welfare Society under Mental Health

Arrhythmia

• Arrhythmia Alliance
• IST Information and Support
• Further Reading

Arteriovenous Malformation

• AVM Support UK
• Further Reading

Arthritis

• Arthritis Research Campaign
• Arthritic Association
• Arthritis Care (and Young Arthritis Care)
• Birmingham Arthritis Resource Centre
• Children's Chronic Arthritis Association

• Hypnosis Help
• Further Reading (Arthritis)
• Further Reading (Juvenile Rheumatoid Arthritis)

Arthrogryposis

• TAG (The Arthrogryposis Group)
• Further Reading

Asbestosis

• contact Occupational and Environmental Diseases Association under Industrial Diseases

Asthma

• Asthma UK
• also British Lung Foundation under Lung
• Further Reading

Aspergers Syndrome

• contact National Autistic Society under Autism

Aspergillosis

• contact British Lung Foundation under Lung

Ataxia

• Ataxia UK
• Further Reading (Ataxia)
• Further Reading (Cerebellar Ataxia)
• Further Reading (Friedreich's Ataxia)

Ataxia-Telangiectasia

• Ataxia-Talangiectasia Society
• Further Reading

Attachment Disorder

• Attachment Disorder Research Trust
• Further Reading

Attention Deficit Hyperactivity Disorder (ADHD)

• ADHD UK Alliance
• BREAK
• Hyperactive Children's Support Group
• Further Reading

Auditory Hallucinations

• see under Hearing Voices

Auriculovertebral Syndrome

• contact Goldenhar Support Group under Goldenhar Syndrome

Autism

• Autism Independent UK
• Autistic Society
• BREAK
• National Autistic Society
• PEACH (Parents for the Early intervention of Autism in CHildren
• Further Reading (Autism)
• Further Reading (Aspergers)

Back Pain

• Backcare
• Back Shop (The)
• Further Reading
• Hypnosis Help

Bardet-Beidl Syndrome

• contact LMBBS under Laurence-Moon-Bardet-Beidl Syndrome

Barth Syndrome

• Barth Syndrome Trust
• also contact Children's Mitochondrial Disease Network under Mitochondrial Disease

Basal Cell Naevus Syndrome

• contact Gorlin Support Group under Gorlin Syndrome

Beal's Contractual Arachnodactyl

• contact Marfan Association under Marfan

Beckwith-Wiedemann Syndrome

• Beckwith-Wiedemann Support Group
• Further Reading

Bed-Wetting

• ERIC - Education and Resources for Improving Childhood Continence
• Hypnosis Help
• Further Reading

Behcet's Syndrome

• Behcet's Syndrome Society
• Further Reading

Benign Tremor

• contact National Tremor Foundation under Essential Tremor

Benzodiazepine Addiction

• contact CITA and TASHA under Sleeping Pill Addiction

Bereavement

• Child Bereavement Trust
• Child Death Helpline
• Compassionate Friends
• COPE
• Cruse Bereavement Care
• HOPELine UK (young suicide prevention)
• Survivors of Bereavement by Suicide
• Winstons Wish
• also Twins Bereavement Group c/o TAMBA under Multiple Births
• also contact National Association of Widows and WAY (Widowed And Young) Foundation under Widows
• also Epilepsy Bereaved under Epilepsy
• also SANDS under Stillbirth
• also SADS (Sudden Adult Death Syndrome) under Sudden Death
• Further Reading (Bereavement)
• Further Reading (Surviving Suicide)
• Hypnosis Help

Best's Disease

• contact British Retinitis Pigmentosa Society under Retinitis Pigmentosa

Biliary Hypoplasia/Biliary Atresia

• contact Children's Liver Foundation under Liver Disease

Bipolar Disorder/Bipolar Affective Disorder

• contact Manic Depression Fellowship under Depression

Birth Defects

• BDF Newlife
• Further Reading (Birth Defects)
• Further Reading (Noonan Syndrome)

Birthmarks

• see under Disfigurement

Bisexual, Lesbian and Gay

• London Friend
• Switchboard
• Further Reading

Blackouts

• contact STARS under Reflex Anoxic Seizure

Bladder

• BEES (Bladder Exstrophy Epispadias Support)
• Bladder Exstrophy Family Association
• see also Cystitis and Overactive Bladder Foundation under Cystitis
• Further Reading (Bladder Exstrophy and Epispadias)

Bladder Pain Syndrome

• Bladder Pain Syndrome Association
• also contact Pelvic Pain Support Network under Pelvic Pain

Blepharospasm

• contact Dystonia Society under Dystonia

Blind/Partially Sighted

• Action for Blind People
• British Blind Sport
• British Wireless for the Blind
• CALIBRE
• Guide Dogs for the Blind
• Living Paintings Trust
• LOOK (Nat. Fed. of Families with Visually Impaired Children)
• National Blind Children's Society
• National Talking Newspapers & Magazines
• Royal National College for the Blind
• Royal National Institute of Blind People
• Vision Aid UK
• Voluntary Transcribers' Group
• Further Reading

Bone Dysplasia

• contact Bone Dysplasia Group c/o Child Growth Foundation under Growth

Bonneville-Ulrich Syndrome

• contact Turner Syndrome Support Society under Turner Syndrome

Borderline Personality Disorder

• BPD World
• Further Reading

Bowel Defects and Abnormalities

• GEEPS

Brachial Plexus Paralysis

• contact Erb's Palsy Group under Erb's Palsy

Brachycephaly

• see under Plagiocephaly

Brain Injured

• ADVANCE (Institute for Advanced Neuromotor Rehabilitation)
• BIRT (Brain Injury Rehabilitation Trust)
• BIBIC (British Institute for Brain Injured Children)
• Brainwave
• Cerebra (Foundation for the Brain Injured Infant)
• Child Brain Injury Trust
• Snowdrop
• also Headway Brain Injury Association under Head Injuries
• Further Reading (Brain Injury)
• Further Reading (Minimal Brain Dysfunction)

Brain Tumour

• Brain and Spine Foundation
• British Brain Tumour Association
• Brain Tumour UK
• see also under Meningioma
• Further Reading

Breughal Syndrome

• see under Dystonia

Brissaud Syndrome

• contact Tourette Syndrome Association under Tourette Syndrome

Brittle Bone

• Brittle Bone Society
• Further Reading (Brittle Bone)
• Further Reading (Osteogenesis Imperfecta)

Broad Thumb/Great Toe Syndrome

• contact RTS Support Group under Rubinstein Taybi Syndrome

Bronchiectasia/Bronchitis

• contact British Lung Foundation under Lung Disease

Bullous Pemphigoid

• Bullous Pemphigoid Support Group

Bullseye Dystrophy

• see under Retinitis Pigmentosa

Bullying/School Phobia

• Bullycide
• Kidscape
• also ParentLine Plus under Parents
• Workplace Bullying
• Further Reading

Burns

• contact Skinship UK under Dermatological Problems
• see also under Disfigurement

Butterfly Dystrophy

• contact British Retinitis Pigmentosa Society under Retinitis Pigmentosa

Caesarean Delivery

• Caesarean Support Network
• Further Reading

Calve-Perthes Disease

• contact Perthes Association under Perthes Disease

Canavan Disease

• see under Leukodystrophy

Cancer

• Beating Bowel Cancer
• Bowel Cancer UK
• Further Reading (Bowel Cancer)
• Breast Cancer Care
• Further Reading (Breast Cancer)
• British Association for Counselling and Psychotherapy
• Cancer and Leukaemia In Childhood
• Further Reading (Childhood Leukaemia)
• CancerBackup
• Cancer Counselling Trust
• Cancer Laryngectomee Trust
• Further Reading (Laryngectomee)
• CancerKin
• Cervical Cancer see Women's Health under Women's Health
• Childhood Eye Cancer Trust
• Further Reading (Retinoblastoma)
• Christian Lewis Trust
• CLIC Sargent
• Edometrial Cancer see Women's Health under Women's Health
• Facial Cancer see Let's Face It under Disfigurement
• Further Reading (Colon Cancer)
• Hospice Information
• Hospice Patients Alliance
• Kidney Cancer UK
• Further Reading (Kidney Cancer)
• Macmillan Cancer Support
• MARCS Line (Melanoma And Related Cancers of the Skin)
• Further Reading (Melanoma)
• Further Reading (Skin Cancer)
• Marie Curie Cancer Care
• Mouth Cancer Foundation
• National Cancer Alliance
• National Hereditary Breast Cancer
• New Approaches to Cancer
• Neuroblastoma Society
• Further Reading (Neuroblastoma)
• Oesophageal Patients Association
• Further Reading (Oesophageal Cancer)
• Ovacome
• Further Reading (Ovarian Cancer)
• Penny Brohn Cancer Care
• Prostate Cancer Charity
• Further Reading (Prostate Cancer)
• Further Reading (Mouth Cancer)
• Rarer Cancers Forum
• Uterine Cancer see Women's Health under Women's Health
• Thyroid Cancer Support see also under Hypoparathyroidism
• Further Reading (Thyroid Cancer)
• Vulval Cancer see Women's Health under Women's Health
• Wessex Cancer Trust
• Further Reading (Testicular Cancer)

           for facial disfigurement caused by facial cancer see Let's Face It under Disfigurement

Candida/Candida Overgrowth

• National Candida Society
• see also Women's Health under Women's Health
• Further Reading

Cardiomyopathy

• contact Cardiomyopathy Association and Cardiac Risk in the Young under Heart
• also SADS UK under Sudden Adult Death Syndrome

Carers

• Able Community Care
• ACT (Association for Children's Palliative Care)
• Crossroads Association
• Carers UK
• Princess Royal Trust for Carers

Carntine Deficiency

• contact Children's Mitochondrial Disease Network under Mitochondrial Disease

Carpenter Syndrome

• contact Headlines under Craniofacial Support.

Catalepsy/Cataplexy

• contact Narcolepsy Association under Narcolepsy

Cavernous Haemangioma

• see under Disfigurement

Cerebellar Ataxia/Cerebellar Atrophy/Cerebellar Degeneration

• contact Ataxia Group under Ataxia

Cerebellar Giantism

• contact Sotos Syndrome Support Group c/o Child Growth Foundation under Growth.

Cerebral Palsy

• Living with Cerebral Palsy
• SCOPE
• Further Reading

Cerebroside Lipidosis

• contact Gauchers Association under Gauchers.

Cervical Smears

• see Women's Health under Women's Health

Charcot-Marie Tooth

• contact CMT United Kingdom under Hereditary and Sensory Motor Neuropathies

Chediak-Higashi Syndrome

• contact Primary Immunodeficiency Association under Immune Deficiency.

Child Abuse/Child Distress/Child Help

• ChildLine
• also Kidscape under Bullying and Careline under Helplines
• Further Reading (Child Abuse)

Childbirth

• see under Pregnancy Advice

Childlessness

• More to Life

Childminders/Childminding Provision

• DayCare Trust
• National Childminding Association
• Working Families

Children in Care

• contact Family Rights Group under Family.

Choroideraemia

• contact British Retinitis Pigmentosa Society under Retinitis.

Christmas Disease

• contact Haemophilia Society under Haemophilia.

Chromosomes (Rare Disorders)

• contact Unique

Chromosome 4

• contact Wolf-Hirschorn Syndrome Support Group under Wolf-Hirschorn.

Chromosome 5

• contact Cri du Chat Syndrome Support Group under Chri du Chat.

Chromosome 13 Trisomy

• contact Soft UK under Trisomy

Chromosome 18 Trisomy

• contact Soft UK under Trisomy

Chromosome 21 Trisomy

• contact Downs Syndrome Association under Downs Syndrome.

Chromosome 22q 11

• Max Appeal

Chrondroectodermal Dysplasia

• contact Ellis-Van Creveld Foundation under Ellis-Van Creveld.

Chronic Degenerative Chorea

• contact Huntington's Disease Association under Huntington's Disease.

Chronic Fatigue Syndrome

• see under Myalgic Encephalomyelitis

Chronic Granulomatous Disorder

• CGD Research Trust
• Further Reading (Granulomatous Diseases)

Chronic Mucotaneous Candidiasis

• contact Primary Immunodeficiency Association under Immune Deficiency.

Chronic Obstructive Airways Disease

• contact British Lung Foundation under Lung.

Chronic Prostatitis

• contact Pelvic Pain Support Network under Pelvic Pain

Churg-Strauss Syndrome

• Churg-Strauss International Support Group
• contact Guillaine-Barre Support Group under Guillaine-Barre Syndrome
• also Arthritis Care under Arthritis
• also Stuart Strange Vasculitis Trust under Wegeners Granulamatosis
• Further Reading

Cicatricial Pemphigoid

• contact Pemphigus Vulgaris Network under Pemphigus Vulgaris.

CJD

• CJD Support Network
• Human BSE Foundation
• Further Reading (CJD)
• Further Reading (Fatal Familial Insomnia)

Cleft Lip

• CLAPA (Cleft Lip and Palate Association)
• Further Reading

Cloacal Exstrophy

• contact BEES under Bladder.

Cloverleaf Syndrome

• contact Headlines under Craniofacial.

Club Foot

• contact STEPS under Lower Limb Abnormalities

Cluster Headaches

• Ouch (UK)
• Hypnosis Help
• Further Reading

Coeliac (Dermatitis Herpetiformis)

• Coeliac UK
• DHOC
• also CORE under Digestive Disorders
• Further Reading (Dermatitis Herpetiformis)
• Further Reading (Coeliac)

Cohen Syndrome

• Cohen Syndrome Support Group

Cold Sores

• Cold Sore Advice

Colitis

• contact National Association for Colitis and Crohn's Disease under Crohn's Disease

Coloboma

• contact MACS under Microthalmia.

Colon Cancer

• contact Bowel Cancer UK under Cancer

Colostomy

• contact Colostomy Association under Stoma

Combat Stress

• contact Ex-Services Mental Welfare Society under Mental Health

Combined Immune Deficiency Disease

• contact Primary Immunodeficiency Association under Immune Deficiency.

Common Variable Immunodeficiency Disease

• contact Primary Immunodeficiency Association under Immune Deficiency.

Cone Dysfunction

• contact Nystagmus Network under Nystagmus.

Congenital Adrenal Hyperplasia

• Congenital Adrenal Hyperplasia
• Further Reading

Congenital Aplastic Anaemia

• contact Fanconi Anaemia UK under Fanconi Anaemia.

Congenital Aregenerative Anaemia

• contact Diamond-Blackfan Support Group under Diamond-Blackfan.

Congenital Central Hypoventilation Syndrome

• CCHS Support Group

Congenital Dislocated Hip

• contact STEPS under Lower Limb Abnormalities

Congenital Hypoplastic Anaemia

• contact Diamond-Blackfan Support Group under Diamond-Blackfan Anaemia

Congenital Melanocytic Naevus

• contact Birthmark Support Group under Disfigurement
• Caring Matters Now

Congenital Muscular Dystrophy

• CMD Support, Tel 01383 736 084
• Further Reading

Congenital Neutropenia

• contact Primary Immunodeficiency Association under Immune Deficiency.
• also Shwachman-Diamond Support under Shwachman-Diamond.

Congenital Ocular Motor Apraxia

• COMA, Tel 01392 460 618 (after 6pm)

Congenital Pancreatic Insufficiency

• contact Shwachman-Diamond Support under Shwachman-Diamond.

Congenital Rubella Damage

• contact Sense under Deaf/Blind.

Congenital Thomsen's Myotonia

• contact Myotonic Dystrophy Support Group under Myotonic Dystrophy.

Constipation

• contact CORE under Digestive Disorders

Contraception/Sex Advice

• BROOK
• Further Reading
• also Marie Stopes Internation under Pregnancy

Cooley's Anaemia

• contact UK Thalassaemia Society under Thalassaemia

Coprolalia Syndrome

• contact Tourette Syndrome Association under Tourette Syndrome.

Cori Syndrome

• contact Association for GSD under Glycogen Storage Diseases.

Cornelia De Lange Syndrome

• Cornelia de Lange Syndrome Foundation
• Further Reading

Corpus Callosum Absence

• contact CORPAL under Agenesis of the Corpus Callosum.

Cosmetic Surgery

• Further Reading

Complex Regional Pain Syndrome

• contact RSD UK under Reflex Sympathetic Dystrophy

Costello Syndrome

• Costello Syndrome Support Group

Cot Death

• FSID (Foundation for the Study of Infant Deaths)
• also SANDS (Stillbirth And Neonatal Death Society) under Stillbirth
• Further Reading

Craniofacial

• Headlines (Craniofacial Support)
• Further Reading

Craniopharyngioma

• contact Pituitary Foundation under Pituitary Disorders

Creutzfeldt-Jakob Disease

• see under CJD.

Cri du Chat

• Cri du Chat Syndrome Support Group

Crime/Victim Support

• Victim Support
• SAMM (Support After Murder and Manslaughter)
• Further Reading

Crohn's Disease

• Crohn's in Childhood Research Association
• National Association for Colitis and Crohn's Disease
• also contact CORE under Digestive Disorders
• Further Reading (Crohn's Disease)
• Further Reading (Colitis)
• Further Reading (Ulcerative Colitis)

Crouzon Syndrome

• contact Headlines (Craniofacial Support) under Craniofacial.

Crying Babies/Sleepless Babies/Demanding Babies

• Cry-Sis
• Further Reading

Cult Victims

• Cult Information Centre
• Further Reading

Cushing's Disease/Cushing Syndrome

• ACTH Association
• also Pituitary Foundation under Pituitary Disorders
• Further Reading

Cutis Hyperelasticum

• contact Ehlers-Danlos Support Group under Ehlers-Danlos.

Cyclical Vomiting Syndrome

• Cyclical Vomiting Syndrome Association
• Further Reading

Cystic Encephalomalacia

• contact Porencephaly Contact Group under Porencephaly

Cystic Fibrosis

• Cystic Fibrosis Trust
• Further Reading

Cystic Hygroma

• Cystic Hygroma Support, Tel 01293 571 545
• also contact Interstitial Cystitis Support Group under Interstitial Cystitis
• Further Reading

Cystitis

• Cystitis and Candida Information Service
• Cystitis and Overactive Bladder Foundation
• Further Reading

Dancing Eye Syndrome

• Dancing Eye Syndrome Support Group
• Further Reading (Opsoclonus Myoclonus)

Dandy-Walker Syndrome

• contact ASBAH under Spina Bifida

Darier's Disease

• Darier's Disease Support Group

Deafness

• British Deaf Association
• DELTA
• Hearing Concern
• Hearing Dogs for Deaf People
• Link Centre for Deafened People
• National Association of Deafened People
• National Deaf Children's Society
• Royal Association for Deaf People
• RNID (Royal National Institute for Deaf People)
• The Elizabeth Foundation for Deaf Children
• Teaching Deaf and Hard of Hearing
• Further Reading

Deaf/Blind

• Deafblind UK
• Sense
• Further Reading (Deaf/Blind)
• Further Reading (Usher Syndrome)

Debt

• Direct Debt Line
• Insolvency Helpline
• National Debtline
• Further Reading

Deep Vein Thrombosis

• contact Circulation Foundation under Vascular Disease

De Lange Syndrome

• contact Cornelia de Lange Syndrome Foundation under Cornelia de Lange

Dementia

• Alzheimer's Society
• Dementia Care Trust
• Lewy-Net
• Pick's Disease Support Group
• Further Reading

Dental Anxiety

• Beyond Fear
• Dental Anxiety and Phobia Association
• Dental Fear Central
• Hypnosis Help
• Further Reading

Depression

• Depression Alliance
• Depression Alliance Scotland
• Depression UK
• Hypnosis Help
• MDF - The Bipolar Organisation
• Further Reading (Bipolar Disorder)
• Further Reading (Depression)
• Further Reading (Manic Depression)

Dermatitis Herpetiformis

• contact Coeliac UK under Coeliac
• Further Reading

Dermatological Problems

• Skinship UK
• Skin Care Campaign
• Further Reading (Skin Problems)
• Further Reading (Mycosis Fungoides)

Dermatomyositis/Polymyositis/Inclusion Body Myositis

• Myositis Support Group
• Further Reading (Myositis)
• Further Reading (Polymyositis)

DES Exposure

• DES Action UK

Devic's Disease

• Gayle's Devic's Syndrome and NMO Support Group

Di George Syndrome

• contact Max Appeal under Chromosome 22q 11

Diabetes

• Diabetes UK
• Insulin Dependent Diabetes Trust
• Further Reading

Diabetes Insipidus

• contact Pituitary Foundation under Pituitary Disorders
• also CLIMB under Metabolic Disorders

Diamond-Blackfan Anaemia

• DBA-UK

Diastasis Symphis Pubis

• British SPD Support Group
• Further Reading

Diarrhoea

• contact CORE under Digestive Disorders

Diaphyseal Aclasis

• contact Hereditary Multiple Exostoses Support Group under Hereditary Multiple Extostoses

Diastrophic Dysplasia

• contact Restricted Growth Association under Growth

Digestive Disorders

• CORE
• Further Reading (Diverticular Disease)
• Further Reading (Indigestion)

Disability

• Ableize Disability Directory
• Assist UK
• Association of Disabled Professionals
• Association of Wheelchair Children
• Queen Elizabeth's Foundation
• BCODP (British Council of Disabled People)
• BLESMA (British Limbless Ex-Service Men's Association
• British Computer Society Disability Group
• British Disabled Waterski Association
• Calvert Trust
• Care and Repair
• DEMAND
• Dial UK
• Disability Alliance
• Disability Equipment Register
• Disability Resource Team
• Disabled Help
• Disability Pregnancy and Parenthood International
• Disability Snowsport UK
• Disabled Christians Fellowship
• Disabled Living Foundation
• Disabled Parents Network
• Disabled Photographers' Society
• Disaway Trust
• Dogs for the Disabled
• Flyability
• Gardening for Disabled Trust
• Grooms-Shaftesbury
• Halliwick Association of Swimming Therapy
• Handicapped Anglers Trust
• Kids
• Limbless Association
• Medical Engineering Resource Unit
• Mobilise Organisation
• Mobility Information Service
• Motability
• NABD (National Association for Bikers with a Disability)
• National Association of Swimming Clubs for the Handicapped
• National Federation of Shopmobility
• National Star College
• RADAR (Royal Association for Disability And Rehabilitation)
• reach (Association for Children with Hand or Arm Deficiency)
• REMAP
• Sequal Trust
• SKILL (National Bureau for Students with Disabilities)
• THRIVE
• Tourism for All
• Transition Information Network
• Vitalise
• Wheelpower
• Wheelyboat Trust
• Whizz-Kidz
• Wireless for the Bedridden Society
• see also Outsiders under Loneliness
• Further Reading (Amputation)

Disfigurement

• Birthmark Support Group
• Changing Faces
• International Skinlaser Directory
• Let's Face It
• also Skinship under Dermatological Problems
• Further Reading

Diverticular Disease

• contact CORE under Digestive Disorders

Divorce/Separation

• Families Need Fathers
• MATCH (Mothers Apart from Their CHildren)
• NACC (National Association of Child Contact Centres)
• National Council for the Divorced and Separated
• ondivorce
• Further Reading
• see also under Parents and under Family

Down's Syndrome

• Down's Heart Group
• Down's Syndrome Association
• Further Reading

Drink Driving

• contact Campaign Against Drinking and Driving
• Hypnosis Help
• Further Reading

Drugs

• Adfam
• Cocaine Anonymous
• Families Anonymous
• Hypnosis Help
• Narcotics Anonymous
• Over Count(over-the-counter drug addiction)
• Seroxat Users Group
• Talk to Frank
• Further Reading

Duchenne Muscular Dystrophy

• Duchenne Family Support Group
• Parent Project UK
• Further Reading

Dumb

• Blissymbol Communications
• see also under Speech

Dwarfism

• contact Child Growth Foundation and Restricted Growth Association under Growth

Dysaesthetic Vulvodynia

• contact Vulval Pain Society under Vulval Pain

Dysautonomia

• Dysautonomia Society
• Further Reading

Dyschondrosteosis

• Dyschondrosteosis Support Group

Dyskeratosis Congenita

• Dyskeratosis Congenita Society, Tel 020 7882 2205.

Dyslexia

• Adult Dyslexia Organisation
• British Dyslexia Association
• Dyslexia Action
• Helen Arkell Dyslexia Centre
• Further Reading

Dysmennorhoea

• contact NAPS and PREMSOC under Premenstrual Syndrome
• also Women's Health under Women's Health
• also contact Pelvic Pain Support Network under Pelvic Pain

Dysphasia

• contact Speakability under Aphasia

Dyspraxia

• Dyspraxia Foundation
• Further Reading (Dyspraxia)
• Further Reading (Minimal Brain Dysfunction)
• Further Reading (Perceptuomotor Dysfunction)

Dystonia

• Dystonia Society
• Further Reading (Blepharospasm)
• Further Reading (Dystonia)
• Further Reading (Spasmodic Torticollis)

Eating Disorders

• beat
• Hypnosis Help
• Overeaters Anonymous
• Further Reading (Eating Disorders)
• Further Reading (Anorexia)
• Further Reading (Obesity)

Ectodermal Dysplasia

• Ectodermal Dysplasia Society

Ectopia Vesicae

• contact BEES under Bladder

Ectopic Pregnancy

• Ectopic Pregnancy Trust
• Further Reading

Eczema

• National Eczema Society
• Skincell International
• Further Reading

Edwards Syndrome

• contact SOFT UK under Trisomy

Education/Education at Home

• Advisory Centre for Education
• Education Otherwise
• Home Education Advisory Service
• WES Home School
• Further Reading
• see also under Special Educational Needs

Ehlers-Danlos Syndrome

• Ehlers-Danlos Support Group
• Further Reading

Ekbom

• Ekbom Support Group

Elderly Care

• see also under Action on Elder Abuse, Disability, Loneliness and Carers
• Age Concern
• Cinnamon Trust
• Counsel and Care
• Elderly Accommodation Counsel
• Universal Beneficent Society
• Further Reading

Electromagnetic Sensitivity

• ES-UK
• see also www.powerwatch.org.uk 

Ellis-Van Creveld Syndrome

• Ellis-Van Creveld Foundation, Tel 01621 828 914
• Ellis-van Creveld (website for parents)

EMG Syndrome

• contact Beckwith-Wiedemann Support Group under Beckwith-Wiedemann

Emphysema

• contact British Lung Foundation under Lung Disease

Encephalitis

• Encephalitis Society
• Further Reading

Encephalofacial Angiomatosis

• contact Sturge Weber Foundation UK under Sturge Weber

Encephalomyelitis Myalgia

• see under  Myalgic Encephalomyelitis

Encropresis

• contact ERIC under Incontinence

Endochrondromatosis

• contact Ollier Disease Self Help Group c/o CaF under Family

Endometriosis

• Endometriosis SHE Trust (UK)
• Endometriosis UK
• Further Reading
• also contact Pelvic Pain Support Network under Pelvic Pain

Enuresis

• ERIC - Education and Resources for Improving Childhood Continence
• Further Reading

Epidermyolysis Bullosa

• DEBRA

Epilepsy

• David Lewis Centre
• Epilepsy Action
• Epilepsy Bereaved
• Epilepsy Scotland
• FABLE (For A Better Life with Epilepsy)
• Joint Epilepsy Council
• National Centre for Young People with Epilepsy (NCYPE)
• National Society for Epilepsy
• Further Reading

Epispadias

• contact BEES under Bladder

Erb's Palsy

• Erb's Palsy Support Group

Erthrogenesis Imperfecta

• contact Diamond-Blackfan Support Group under Diamond-Blackfan

Erythromelalgia

• contact Raynaud's and Scleroderma Association under Raynauds

Essential Tremor

• National Tremor Foundation
• Further Reading

Exomphalos

• contact GEEPS under Bowel Defects and Abnormalities
• also contact Beckwith-Wiedemann Support Group under Beckwith-Wiedemann

Exstrophy of the Bladder

• contact BEES under Bladder

Fabry's Disease

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Facial Disfigurement/Cancer

• see Let's Face It under Disfigurement

Facioauriculovertebral Syndrome

• contact Goldenhar Support Group under Goldenhar Syndrome

Facioscapulohumeral Syndrome

• contact FSH Muscular Dystrophy Support Group under Muscular Dystrophy

Fainting

• contact STARS under Reflex Anoxic Seizures

False Memory

• British False Memory Society, Tel 01225 868 682
• Further Reading

Familial Atherosclerosis

• contact Family Heart Association under Heart Disorders

Familial Gout/Familial Juvenile Gout

• contact PUMPA under Metabolic Disease

Familial Haemorrhagic Telangiectasia

• Telangiectasia Self Help Group
• Further Reading

Familial Hypercholesterolaemia

• contact Family Heart Association under Heart Disorders

Familial Hyperlipidaemia

• contact Family Heart Association under Heart Disorders

Familial Spastic Paraplegia

• FSP Self Help Group
• Further Reading

Familial Tremor

• contact National Tremor Foundation under Essential Tremor

Family

• see also under Parents
• Care for the Family
• Contact A Family
• Family Rights Group
• Fatherhood Institute
• FWA
• Institute of Family Therapy
• also Disabled Parents Network under Disability

Fanconi Anaemia

• FAB-UK, Tel 0115 926 9634

Fatal Familial Insomnia

• contact CJD Support Network under CJD.

Feet (odd size/one foot)

• Sole Mates, Tel 020 8524 2423

Female to Male Transgender

• FtM
• Further Reading

Feminising Testes Syndrome

• Androgen Insensitivity Syndrome Support Group

Fetal Anti-Convulsant Syndrome

• OACS

Fibroids

• Fibroid Network
• Further Reading
• also contact Pelvic Pain Support Network under Pelvic Pain

Fibromyalgia

• Fibromyalgia Association UK
• also Women's Health under Women's Health
• also contact Pelvic Pain Support Network under Pelvic Pain
• Further Reading

Fibrosing Alveolitus

• contact British Lung Foundation under Lung

First Arch Syndrome

• contact Treacher-Collins Family Support Group under Treacher-Collins

Foetal Alcohol Syndrome

• FASAwareUK
• FASD Trust
• NOFAS-UK
• Further Reading

Fostering

• see under Adoption

Fragile X

• Fragile X Society
• Further Reading

Franschetti-Klein Syndrome

• contact Treacher-Collins Family Support Group under Treacher-Collins

Friedreich's Ataxia

• contact Ataxia UK under Ataxia

Frontotemporal Dementia

• Pick's Disease Support Group under Pick's Disease

Fucosidosis

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Galactosaemia

• Galactosaemia Support Group

Gallstones/Gall Bladder Disease

• contact British Liver Trust under Liver

Gambling

• Gamblers Anonymous
• GamCare
• Hypnosis Help
• Further Reading

Gastric Reflux

• Living With Reflux
• Sickybabies
• Further Reading (Gastro-Oesphageal Reflux)
• also contact TOFS under Tracheo-Oesphageal Fistula

Gastroschisis Exomphalos Extrophies

• contact GEEPS under Bowel Defects

Gaucher's Disease

• Gauchers Association
• Further Reading

GBS

• Group B Strep Support

Gender Identity

• see under Transexual/Transgender/Gender Identity

Generalised Flexion Epilepsy

• contact West Syndrome Support Group under West Syndrome

Generalised Tic Syndrome

• contact Tourette Syndrome Association under Tourette Syndrome

Genetic Disorders

• Genetic Interest Group
• for Male Genetic disorders also contact Men's Health Line, Tel 020 8995 4448
• Further Reading

Gerstmann-Straussler Syndrome

• contact Alzheimer's Society under Alzheimer's
• also contact CJD Support Network under CJD.

Giant Cell Arteritis

• contact Stuart Strange Vasculitis Trust under Wegeners Granulamatosis

Giantism

• contact Beckwith-Wiedemann Support Group under Beckwith-Wiedemann

Gifted Children

• Gifted Children's Information Centre
• National Association for Gifted Children
• CHI (Support for Children of High Intelligence)
• Further Reading

Gilles de la Tourette Syndrome

• contact Tourette Syndrome Association under Tourette Syndrome

Glanzmann's Thrombasthenia

• Glanzmann's Thrombasthenia Group

Glaucoma

• International Glaucoma Association
• Further Reading

Glomerulonephritis

• contact British Kidney Patient Association and National Kidney Federation under Kidney

Gluten Sensitivity

• contact Coeliac UK under Coeliac

Glycogen Storage Disease

• Association for GSD

Goldberg-Maxwell Syndrome

• contact Androgen Insensitivity Syndrome Support Group under Androgen Insensitivity

Goldenhar Syndrome

• Goldenhar Family Support Group

Gorlin Syndrome

• Gorlin Syndrome Group

Gout

• UK Gout Society
• Further Reading

Grandparents

• Grandparent's Association

Granulomatous Diseases

• contact CGD Research Trust under CGD

Greig Syndrome

• contact Headlines (Craniofacial Support) under Craniofacial

Group B Streptococcal Infections

• Group B Strep Support

Growth

• Child Growth Foundation
• Restricted Growth Association
• Tall Persons Club GB
• Further Reading (Dwarfism)
• Further Reading (Russell-Silver Syndrome)

Growth Hormone Deficiency

• contact Growth Hormone Deficiency Support Group, c/o CGF under Growth
• also Pituitary Foundation under Pituitary Disorders
• Further Reading (Growth Hormone Deficiency)
• Further Reading (Achondroplasia)

Guillain-Barré Syndrome

• Guillain-Barré Syndrome Support Group
• Further Reading (Guillain-Barre)
• Further Reading (Polyneuropathy)
• Further Reading (Transverse Myelitis)

Gulf War Syndrome

• Further Reading

Gut Motility Disorders

• Tummy Trouble, Tel 0844 815 1415

Gynaecological Problems

• see under Women's Health

Haemangioma

• contact Birthmark Support Group under Disfigurement

Haematuria

• Loin Pain and Haematuria Syndrome

Haemochromatosis

• Haemochromatosis Society
• Further Reading

Haemophilia

• Haemophilia Society
• Further Reading (Haemophilia)
• Further Reading (Von Willebrand)

Hairless Pseudofemale Syndrome

• contact Androgen Insensitivity  Support Group under Androgen Insensitivity

Hair Loss

• Alopecia UK
• Hair Loss UK
• Further Reading

Head Injuries

• Child Brain Injury Trust
• BASIC (Brain And Spine Injury Charity)
• Headway Brain Injury Association
• Further Reading

Head Lice

• Community Hygiene Concern
• Further Reading

Healthcare/Hospital Infections

• contact NCHI under MRSA

Hearing Voices

• Hearing Voices Network
• Further Reading

Heart

• Arrhythmia Alliance
• British Cardiac Patients Association
• British Heart Foundation
• Cardiomyopathy Association
• Children's Heart Association
• Children's Heart Federation
• CRY (Cardiac Risk in the Young)
• HEART UK
• Heart Line Association
• High Blood Pressure Foundation
• Further Reading (High Blood Pressure)
• My Heart Bypass
• Further Reading (Heart Disease)
• Further Reading (Cardiomyopathy)
• Further Reading (Hyperlipidaemia)
• Further Reading (Hypercholesterolaemia)
• Further Reading (Hypertriglyceridaemia)
• Further Reading (Hypertrophic Cardiomyopathy)
• also contact Anticoagulation Europe under Anticoagulation
• see also under Down's Syndrome

Helplines

• CareLine
• The Samaritans

Henloch-Schonlein Purpura

• contact Stuart Strange Vasculitis Trust under Wegener Granulamatosis

Hemifacial Microsomia

• contact Goldenhar Support Group under Goldenhar

Hemihypertrophy

• contact Beckwith-Wiedemann Syndrome Support Group under Beckwith-Wiedemann

Hemimegalencephaly

• contact Contact A Family under Family

Hemiplegia

• Hemi-Help
• Further Reading

Hepatitis B, Hepatitis C, Viral Hepatitis

• contact British Liver Trust under Liver
• Hepatitis B Foundation
• Hepatitis C Trust
• Further Reading

Hereditary Angiodema

• contact Primary Immunodeficiency Association under Immune Deficiency

Hereditary Motor and Sensory Neuropathies

• CMT International UK
• see also under Muscular Dystrophy
• Further Reading (Motor Neuropathy)
• Further Reading (Charcot-Marie Tooth)

Hereditary Multiple Exostoses

• Hereditary Multiple Extoses Support Group

Hereditary Progressive Arthro-Opthalmopathy

• contact Stickler Syndrome Support Group under Stickler Syndrome

Hereditary Spastic Paraparesis

• contact FSP Self Help Group under Familial Spastic Paraplegia

Hernia/Hiatus Hernia

• British Hernia Centre
• Further Reading

Herpes Simplex

• SPHERE (Herpes Viruses Association)
• Further Reading

Hidradenitis Suppurativa

• Skincell International
• Further Reading

High Blood Pressure

• contact High Blood Pressure Foundation under Heart Disorders

Hirschsprung's

• contact Gut Motility Disorders, Tel 01737 359 873
• Hirschprung's & Motility Disorders Support Network
• Further Reading

HIV and AIDS

• Children With Aids Charity
• Eileen Trust, 020 7799 3184
• HIV i-Base
• JAT (Jewish Sexual Health Charity)
• National Aids Trust
• Positively Women
• Further Reading

Hodgkin's Disease

• contact Lymphoma Association under Lymphoma
• also contact Leukaemia CARE under Leukaemia

Homosexuality

• London Friend
• for Parents of contact Acceptance under Parents
• Further Reading

Hormone Replacement Therapy

• Contact Women's Health Concern under Women's Health

Hughes Syndrome

• Hughes Syndrome Foundation
• Further Reading

Human Papilloma Virus

• see Women's Health under Women's Health

Hunter Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Huntington's Disease

• Huntington's Disease Association
• Further Reading

Hurler Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

HVM

• contact Gut Motility Disorders, Tel 01737 359 873

Hydrocephalus

• contact Association for Spina Bifida and Hydrocephalus under Spina Bifida

Hyper 1ge Syndrome

Hyperactive Children

• Hyperactive Children's Support Group
• Further Reading
• see also under Special Needs

Hyperchrondoplasia

• contact Restricted Growth Association under Growth

Hyperexplexia

• Hyperexplexia Contact Group, Tel 020 8578 0456

Hypergammaglobulinaemia

• contact Primary Immunodeficiency Association under Immune Deficiency

Hypermobility

• Hypermobility Syndrome Association
• Further Reading

Hypersensitive Arteritis

• contact Arthritis Care under Arthritis
• also contact Stuart Strange Vasculitis Trust under Wegener Granulamatosis

Hypersensitivity Vasculitis

• contact Stuart Strange Vasculitis Trust under Wegener Granulamatosis

Hypertriglyceridaemia

• contact British Heart Foundation under Heart

Hypertrophic Cardiomyopathy

• contact Cardiomyopathy Association under Heart

Hyperthyroidism/Hypothyroidism

• contact British Thyroid Foundation under Thyroid

Hypopituitarism

• contact Growth Hormone Deficiency Support Group, c/o CGF under Growth
• also Pituitary Foundation under Pituitary Disorders

Hypohydrotic Ectodermal Dysplasia

• contact Ectodermal Dysplasia Society under Ectodermal Dysplasia

Hypomelanosis of ITO

• HITS (UK) Family Support Network

Hypoparathyroidism

• Hypoparathyroidism UK
• Further Reading

Hypospadias

• Hypospadias Support Group
• Further Reading

Hypsarrhythmia

• contact West Syndrome Support Group under West Syndrome

Hysterectomy

• Hysterectomy Association
• Recommended Reading

I-Cell Disease

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Ichthyosis/Lamella/Collodian

• Ichythyosis Support Group
• Further Reading

Idiopathic Erythroblastopenia

• contact Diamond-Blackfan Support Group under Diamond-Blackfan

Ileostomy

• contact ia (Ileostomy & Internal Pouch Support) under Stoma

Ilizarov and External Fixators

• Ilizarov & External Fixator Wearers Support Group
• Further Reading

Immotile Cilia Syndrome

• contact PCD Family Support Group under Primary Ciliary Dyskensia

Immune Deficiency Syndromes

• Primary Immunodeficiency Association
• Further Reading

Immune Thrombocytopenic Purpura

• ITP Support Association

• Further Reading

Immunisation

• JABS
• The Informed Parent
• Further Reading

Impotence

• Sexual Dysfunction Association
• Further Reading
• Hypnosis Help

Incontinence

• InContact
• Hypnosis Help
• Further Reading

Incontinentia Pigmentosia

• contact Ectodermal Dysplasia Society under Ectodermal Dysplasia

Incontinentia Pigmentosum Achromians

• contact HITS UK FSN under Hypomelanosis of ITO

Indigestion

• contact CORE under Digestive Disorders

Industrial Diseases

• Occupational and Environmental Diseases Association
• Further Reading (Industrial Diseases)
• Further Reading (Asbestosis)

Infertility

• ACeBabes
• Donor Conception Network
• Foresight
• Infertility Network UK
• More to Life
• Further Reading

Influenza

• Consumer Health Information
• Further Reading

Inquest Problems

• INQUEST

Insomnia

• Hypnosis Help
• Sleep Matters
• Sleep Council
• Further Reading

Insulin Dependent Diabetes

• Insulin Dependent Diabetes Trust
• Further Reading

Intestinal Disorders

• see under Stoma

Intravenous Feeding

• PINNT

Interstitial Cystitis

• Interstitial Cystitis Support Group
• also contact Pelvic Pain Support Network under Pelvic Pain
• Further Reading

Irritable Bowel Syndrome

• Scottish IBS Support
• The Gut Trust
• Hypnosis Help
• Further Reading
• also contact CORE under Digestive Disorders
• and Pelvic Pain Support Network under Pelvic Pain

Isolation

• see under Loneliness

ITO Syndrome

• contact HITS UK FSN under Hypomelanosis of ITO

Ivemark Syndrome

• Ivemark Syndrome Support Group, Tel 01823 257 430

IVF/Egg Donation

• Daisy Network
• Further Reading (Premature Menopause)

Jacknife Seizures

• contact West Syndrome Support Group under West Syndrome

Jackson-Weiss Syndrome

• contact Headlines under Craniofacial

Juvenile Rheumatoid Arthritis

• see under Arthritis

Juvenile Spondylitis

• contact Arthritis Care under Arthritis

Kallmann's Syndrome

• contact Pituitary Foundation under Pituitary Disorders

Kartegner Syndrome

• contact PCD Family Support Group under Primary Ciliary Dyskensia

Kawasaki Disease

• Kawasaki Support Group
• Further Reading

Kearns-Sayre Syndrome

• contact Children's Mitochondrial Disease Network under Metabolic Diseases

Kennedy's Disease

• SBMA UK

Keratoconus

• Keratoconus Self Help
• Further Reading

Kidney/Kidney Cancer

• British Kidney Patient Association
• contact Kidney Cancer UK under Cancer
• National Kidney Federation
• Further Reading (Kidney Disease)
• Further Reading (Glomerulonephritis)
• Further Reading (Polycystic Kidney Disease)

Kinsbourine Syndrome

• contact Dancing Eye Syndrome Support Group under Dancing Eye Syndrome

Kleeblattschaedel Syndrome

• contact Headlines (Craniofacial Support) under Craniofacial

Klinefelter's Syndrome

• Klinefelter's Organisation
• Klinefelter's Syndrome Association
• Further Reading

Klippel-Feil Syndrome

• contact Treacher Collins Family Support Group under Treacher Collins
• Further Reading

Klumpke's Paralysis

• contact Erb's Palsy Support Group under Erb's Palsy

Kohlers Disease

• contact Perthes Association under Perthes Disease

Krabbe Disease

• see under Leukodystrophy

Krukenbergs Spindle and Pigment Dispersion Syndrome

• Krukenbergs Spindle Support

Kugelberg-Welander

• contact Jennifer Trust for Spinal Muscular Atrophy under Spinal Muscular Dystrophy

Laigh's Disease/Laigh's Syndrome

• contact Children's Mitochondrial Disease Network under Mitochondrial Diseases

Landau Kleffner Syndrome

• FOLKS (Friends of Landau Kleffner Syndrome)

Landouzy-Dejerine Syndrome

• contact FSH Muscular Dystrophy Support Group under Muscular Dystrophy

Landry's Syndrome

• contact Guillaine-Barre Syndrome Support Group under Guillaine-Barre

Laryngeal Dystonia

• contact Dystonia Society under Dystonia

Laryngectomy

• National Association of Laryngectomee Clubs
• Further Reading

Laurence-Moon-Bardet-Biedl Syndrome

• LMBBS

Learning Difficulties/Learning Disabilities

• see also under Special Educational Needs and Mental Health
• BIBIC (British Institute for Brain Injured Children)
• BREAK
• Foundation for People with Learning Disabilities
• MENCAP
• RESCARE
• United Response
• Further Reading

Leber's Optic Neuropathy

• contact Children's Mitochondrial Disease Network under Mitochondrial Diseases

Left-Handed

• Anything Left-Handed Limited
• Further Reading

Legg-Calve-Perthes Syndrome

• contact Perthes Association under Perthes Disease

Leg Ulcers

• contact Circulation Foundation under Vascular Diseases
• contact Wound Care Society under Pressure Sores

Lejeune Syndrome

• contact Cri Du Chat Syndrome Support Group under Cri du Chat

Lennox-Gastaut Syndrome

• Lennox-Gastaut Support Group
• Further Reading

Leroy Disease

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Lesch-Nynan Syndrome

• contact PUMPA under Metabolic Diseases

Leukaemia

• ELF (Elimination of Leukaemia Fund)
• Leukaemia CARE
• Leukaemia Research Fund
• Further Reading

Leukodystrophy

• The British Trust for the Myelin Project
• Further Reading (Alexander Disease)
• Further Reading (Canavan Disease)
• Further Reading (Krabbe Disease)
• Further Reading (Leukodystrophy)
• Further Reading (Refsum Disease)

Lewy Bodies

• Further Reading

Lichen Sclerosus

• National Lichen Sclerosus Support Group
• Further Reading

Linear Scleroderma

• contact Raynaud's & Scleroderma Association under Raynaud's

Lissencephaly

• Lissencephaly Contact Group
• Further Reading (Lissencephaly)
• Further Reading (Neuronal Migration Disorders)
• Further Reading (Neutropenia)

Liver

• British Liver Trust
• Children's Liver Disease Foundation
• Obstetric Cholestasis Support and Information Service
• The PBC Foundation (UK)
• PSC Support
• Primary Sclerosing Cholangitis Trust
• Further Reading (Liver Disease)
• Further Reading (Biliary Hypoplasia/Atresia)
• Further Reading (Gallstones)
• Further Reading (Primary Biliary Cirrhosis)

Liver Tumours

• HALT (Help Against Liver Tumours), Tel 0161 720 2179
• Further Reading

Loin Pain

• Loin Pain & Haematuria Syndrome

Loneliness

• Contact the Elderly
• Outsiders
• Further Reading (loneliness)
• Further Reading (sex and disability)

Long QT Syndrome

• contact SADS UK under Sudden Adult Death Syndrome

Lowe Syndrome

• Lowe Syndrome Association
• Lowe Syndrome Trust

Lower Limb Abnormalities

• STEPS

Luft Disease

• contact Children's Mitochondrial Disease Network under Mitochondrial Diseases

Lung

• British Lung Foundation
• SILA (Sarcoidosis and Interstitial Lung Association)
• Further Reading (Lung Disease)
• Further Reading (Aspergillosis)
• Further Reading (Bronchitis)
• Further Reading (Emphysema)
• Further Reading (Pulmonary Fibrosis)
• Further Reading (Sarcoidosis)

Lupus

• LUPUS UK
• Further Reading (Lupus)
• Further Reading (Systemic Lupus Erythematosus)

Lyme Disease

• Eurolyme
• Lyme Disease Action
• Further Reading

Lymphangioma

• contact Cystic Hygroma Support under Cystic Hygroma

Lymphoedema

• Lymphoedema Support Network
• Further Reading

Lymphoma

• Lymphoma Association
• Further Reading (Lymphoma)
• Further Reading (Hodgkin's Disease)
• Further Reading (Non Hodgkins Lymphoma)

Macroglossia Syndrome

• contact Beckwith-Wiedemann Support Group under Beckwith-Wiedemann

Macular Disease

• Macular Disease Society

Madelung Wrist Deformity

• Madelung Wrist Deformity Self Help

Maigne Syndrome

• contact Pelvic Pain Support Network under Pelvic Pain

Mal de Debarquement Syndrome

• MdDS UK Support Group

Male Pseudo-Hermaphrodism

• contact Androgen Insensitivity Syndrome Support Group under Androgen Insensitivity

Manic Depression

• see under Depression

Malignant Hyperthermia

• British Malignant Hyperthermia Association
• Further Reading

Maroteaux-Lamy-Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Marfan

• Marfan Association
• Further Reading

Marital Problems

• contact BASRT and Relate under Personal Relationship Problems

McArdle Disease

• contact Association for Glycogen Storage Diseases under Glycogen Storage Diseases

McUne Albright Syndrome

• contact Ollier Disease Self Help Group c/o CaF under Family

Medical Accidents/Medical Incompetence

• Action Against Medical Accidents

Meige's Disease

• contact Dystonia Society
• Further Reading

Melanoma

• contact Marcs Line under Cancer

Melnick Needles

• contact Contact A Family under Family

Membraneous Nephropathy

• MGN Support Group

Meniere's Disease

• Meniere's Society
• Further Reading

Meningioma

• Meningioma UK
• Further Reading

Meningitis

• Meningitis Research Foundation
• Meningitis Trust
• Further Reading

Menkes Disease

• contact Children's Mitochondrial Disease Network under Mitochondrial Diseases

Menopause

• Daisy Network
• also Women's Health Concern under Women's Health
• Further Reading (Hormone Replacement Therapy)
• Further Reading (Menopause)

Men's Health

• Men's Health Line

Mental Health

• see also under Learning Difficulties and Special Needs and Borderline Personality Disorder
• Arbours Association
• Counselling Directory
• Ex-Services Mental Welfare Society
• Further Reading (Combat Stress)
• MENCAP
• Mental Health Foundation
• Mental Health Matters
• Mental Health Media
• MIND
• Philadelphia Association
• Rethink
• SaneLine
• Threshold Women's Mental Health Infoline
• together
• Young Minds Trust
• Zito Trust
• Hypnosis Help
• Further Reading

Mercury Amalgam Poisoning

• PAMA (Patients Against Mercury Amalgams)

Metabolic Diseases

• CLIMB (Children Living with Inherited MetaBolic Diseases)
• National Society for Phenylketonuria
• Organic Acidaemias
• PUMPA (Purine Metabolic Patients Association)
• Society for Mucopolysaccharide Diseases
• Further Reading (Metabolic Diseases)
• Further Reading (Hunter Syndrome)
• Further Reading (Hurler Syndrome)
• Further Reading (I-Cell Disease)
• Further Reading (Kearns-Sayre Syndrome)
• Further Reading (Phenylketonuria)
• Further Reading (Fabry's Disease)
• Further Reading (Tay-Sachs)

Microcephaly

• Microcephaly Support Group
• Further Reading

Micropthalmia

Micropthalmia and Anopthalmia Children's Society

Microscopic Arteritis

• contact Stuart Strange Vasculitis Trust under Wegeners Granulamatosis

Migraine

• Migraine control through Hypnosis
• Migraine Action Association
• Migraine Trust
• Further Reading

Miller Syndrome

• contact Treacher-Collins Family Support Group under Treacher-Collins

Miller-Dieker Syndrome

• contact Lissencephaly Contact Group under Lissencephaly

Mingie Disease

• contact Children's Mitochondrial Disease Network under Mitochondrial Disease

Minimal Brain Dysfunction

• BIBIC under Brain Injured also Dyspraxia Foundation under Dyspraxia

Miscarriage

• Miscarriage Association
• Scottish Care and Information on Miscarriage
• also Foresight under Infertility and Tommy's under Pregnancy Advice
• Further Reading (Miscarriage)

Missing Persons

• Missing People
• Salvation Army Family Tracing Service

Mitochondrial Disease

• Children's Mitochondrial Disease Network
• Further Reading (Alpers Disease)
• Further Reading (Mitochondrial Disease)
• Further Reading (Carntine Deficiency)
• Further Reading (Menkes Disease)

Moebius Syndrome

• Moebius Syndrome Support Group
• Further Reading

Monosomy X Syndrome

• contact Turner Syndrome Support Society under Turner Syndrome

Morphea

• contact Raynaud's & Scleroderma Association under Raynaud's

Morris's Syndrome

• contact Androgen Insensitivity Support Group under Androgen Insensitivity

Morquio Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Mosaic Down Syndrome

• Mosaic Down Syndrome UK

Mothers

• Association for Post Natal Illness
• MATCH (Mothers Apart from Their CHildren

Motor Neurone Disease

• Motor Neurone Disease Association
• Scottish Motor Neurone Disease Association
• Further Reading

Mowat-Wilson Syndrome

• Mowat-Wilson Syndrome Support Group

MRSA

• MRSA Action UK
• National Concern for Healthcare Infections
• Further Reading

Mutocaneous Candidiasis

• contact Primary Immunodeficiency Association under Immune Deficiency

Mucocutaneous Lymph Node Syndrome

• contact Kawasaki Support Group under Kawasaki

Mucopolysaccharide Diseases

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Multi-Infarct Dementia

• contact Alzheimer's Society under Alzheimer's

Multiple Births

• Multiple Births Foundation
• TAMBA (Twins And Multiple Births Association
• Further Reading

Multi Epihyseal Dysplasia

• contact Perthes Association under Perthes

Multiple Endocrine Neoplasia

• AMEND
• Further Reading

Multiple Sclerosis

• Multiple Sclerosis National Therapy Centres
• MS Trust
• Multiple Sclerosis Resource Centre
• Multiple Sclerosis Society
• Further Reading

Multiple Sulphatase Deficiency

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Multiple System Atrophy

• Sarah Matheson Trust
• Further Reading

Murder/Manslaughter

• contact SAMM under Crime

Muscular Dystrophy

• Duchenne Family Support Group
• FSH-MD
• Muscular Dystrophy Campaign
• Parent Project UK
• Further Reading

Myalgic Encephalomyelitis/Myalgic Encephalopathy (ME)

• 25% ME Group
• Action for ME
• Association of Youth with ME
• Help with ME
• ME Association
• National ME Centre
• Hypnosis Help
• Further Reading (Myalgic Encephalomyelitis)
• Further Reading (Post Viral Syndrome)
• Further Reading (Viral Fatigue Syndrome)

Myasthenia Gravis

• Myasthenia Gravis Association
• Further Reading

Mycosis Fungoides

• contact Skinship (UK) under Dermatological Problems

Myeloma

• Myeloma UK
• also contact Leukaemia CARE under Leukaemia
• Further Reading

Myoclonic Encephalopathy

• contact Dancing Eye Syndrome Support Group under Dancing Eye

Myotonic Dystrophy

• Myotonic Dystrophy Support Group
• Further Reading

Naevus

• see under Disfigurement

Nail-Patella Syndrome

• Nail-Patella Syndrome UK
• Further Reading

Narcolepsy

• UKAN
• Further Reading

Neonatal Care

• see under Premature Babies

Neonatal Hypoglycaemia

• contact Beckwith-Wiedmann Syndrome Support Group under Beckwith-Wiedemann

Neurally Mediated Syncope

• contact STARS under Reflex Anoxic Seizure

Neural Tube Disorder

• contact ASBAH under Spina Bifida

Neuroblastoma

• contact Neuroblastoma Society under Cancer

Neurofibromatosis

• Neurofibromatosis Association
• Further Reading

Neuronal Migration Disorders

• contact Lissencephaly Contact Group under Lissencephaly

Neutropenia

• contact Primary Immunodeficiency Association under Immune Deficiency

Niemann-Pick Disease

• Niemann-Pick Disease Group
• Further Reading

Non Hodgkins Lymphoma

• contact Lymphoma Association and Lymphoma Net under Lymphoma
• also contact Leukaemia CARE under Leukaemia

Noonan Syndrome

• contact Birth Defects Foundation under Birth Defects

Nystagmus

• Nystagmus Network
• Further Reading

Obesity/Weight Problems

• see under Eating Disorders

Obsessive Behaviour/Obsessive Compulsive Disorder

• see under Phobias

Obstetric Cholestasis

• contact Obstetric Cholestasis Support & Information Service under Liver

Obstetric Disorders

• see under Women's Health

Ocular Motor Apraxia

• Website

Oesophageal Atresia

• contact TOFS under Tracheo-Oesophageal Fistula

Oesophageal Cancer

• contact Oesophageal Patients Association under Cancer

Ollier's Disease

• contact Ollier Disease Self Help Group c/o CaF under Family
• Further Reading (McUne Albright Syndrome)
• Further Reading (Polyostotic Fibrous Dysplasia)

One Parent Families

• see under Single Parents

Opsoclonus Myoclonus

• contact Dancing Eye Syndrome Support Group under Dancing Eye

Oral Cancer

• contact Restorative Dental Oncology Clinic under Cancer

Oromandibular Dystonia

• contact Dystonia Society under Dystonia

Organ Donation

• British Organ Donor Society
• Further Reading

Organ Transplantation

• Transplant Support Network
• Further Reading

Osgood Schlatter Disease

• contact Perthes Association under Perthes Disease

Osler-Rendu-Weber Syndrome

• contact Telangiectasia Self Help Group under Telangiectasia

Osteogenesis Imperfecta

• contact Brittle Bone Society under Brittle Bone

Osteopetrosis

• Osteopetrosis Support Trust
• Further Reading

Osteoporosis

• National Osteoporosis Society
• Further Reading

Otto Syndrome

• contact TAG under Arthrogryposis

Ovarian Cancer

• contact Ovacome under Cancer

Ovarian Cists

• see Women's Health under Women's Health
• also contact Pelvic Pain Support Network under Pelvic Pain

Pachygyria

• contact Lissencephaly Contact Group under Lissencephaly

Paget's Disease

• NARPD
• Further Reading

Pain

• Hypnosis Help for Pain Control
• Inspirability
• Pain Concern
• PainSupport
• for Neuropathic Pain contact Neuropathy Trust under Peripheral Neuropathy
• Further Reading

Pallid Syncope

• contact STARS under Reflex Anoxic Seizure

Pancreatitis

• MRI Pancreatitis Support Group
• Pancreatitis Supporters Network
• Further Reading

Panhypopituitarism

• contact Growth Hormone Deficiency Support Group c/o CGF under Growth
• also Pituitary Foundation under Pituitary Disorders

Panic Attacks

• see under Phobia (below)
• Further Reading
• Hypnosis Help for Panic Attacks

Parents

• Acceptance
• Further Reading (Parents of Homosexual)
• British False Memory Society (BFMS)
• Don't forget about Daddy (Parental Alienation Syndrome)
• ParentLine Plus
• Parent Network, Tel 01323 638 324
• REUNITE under Abducted Children
• see also under Single Parents
• also Disabled Parents Network under Disability

Parkinson's Disease

• Parkinson's Disease Society
• Further Reading

Paruresis

• UK Paruresis Association
• Further Reading

Patau Syndrome

• contact SOFT UK under Trisomy

Pelizaeus-Merzbacher

• Pelizaeus-Merzbacher Support Group, Tel 01525 716 907
• see also under Leukodystrophy
• Further Reading

Pearson Marrow Syndrome

• contact Children's Mitochondrial Disease Network under Mitochondrial Disease

Pelvic Dysfunction

• contact British SPD Support Group under Diastasis Symphis Pubis
• Further Reading

Pelvic Inflammatory Disease

• Contact Pelvic Pain Support Network (below) and Women's Health Concern under Women's Health

Pelvic Pain

• Pelvic Pain Support Network
• Further Reading (Adenomyosis)
• Further Reading (Chronic Prostatitis)
• Further Reading (Pelvic Inflammatory Disease)
• Further Reading (Pelvic Pain)

Pemphigus Vulgaris

• Pemphigus Vulgaris Network
• Further Reading

Perceptuomotor Dysfunction

• contact Dyspraxia Foundation under Dyspraxia

Period Pain

• contact PREMSOC (Premenstrual Society), Tel 01932 872 560
• Further Reading
• also Women's Health under Women's Health
• also Endometriosis UK under Endometriosis
• also Pelvic Pain Support Network under Pelvic Pain

Peripheral Neuropathy

• Neuropathy Trust

Pernicious Anaemia

• The Pernicious Anaemia Society

Peroneal Muscular Atrophy

• contact CMT United Kingdom under Hereditary and Sensory Motor Neuropathies

Personal Relationship Problems

• BASRT (British Association for Sexual and Relationship Therapy)
• RELATE
• Hypnosis Help
• Further Reading (Marital Problems)

Perthes Disease

• Perthes Association
• Further Reading (Perthes Disease)
• Further Reading (Calve-Perthes Disease)
• Further Reading (Osgood Schlatter Disease)

Pesticide Exposure

• Pesticide Action Network
• UK Pesticides Campaign
• Further Reading

Pfeiffer Syndrome

• contact Headlines under Craniofacial

Phenylketonuria

• contact National Society for Phenylketonuria under Metabolic Diseases

Phobia

• Anxiety Care
• Dental Anxiety and Phobia Association
• FearFreeFlying (fear of flying/aerophobia)
• First Steps to Freedom
• Hypnosis Help
• National Phobics Society
• No Panic
• OCD Action
• OCD UK
• OCD World
• Phobia World
• Triumph Over Phobia (TOP UK)
• Further Reading (Agoraphobia)
• Further Reading (Phobia)
• Further Reading (Obsessive Compulsive Disorder)

Pick's Disease

• Pick's Disease Support Group
• Further Reading (Pick's Disease)
• Further Reading (Frontotemporal Dementia)

Pierre-Robin

• contact CLAPA under Cleft Lip

Pituitary Disorders

• Pituitary Foundation
• Further Reading (Pituitary Disorders)
• Further Reading (Craniopharyngioma)
• Further Reading (Diabetes Insipidus)
• Further Reading (Prolactinoma)

Pituitary Hormone Deficiency

• contact Growth Hormone Deficiency Support Group c/o CGF under Growth
• Further Reading

Plagiocephaly

• Headstart4babies
• Plagiocephaly Care
• Further Reading

Poland Syndrome

• Poland Syndrome Support
• also contact reach under Disability

Polio

• British Polio Fellowship
• Further Reading

Polyarteritis Nodosa

• Polyarteritis (Vasculitis) Contact
• also contact Stuart Strange Vasculitis Trust under Wegeners Granulamatosis and Arthritis Care under Arthritis

Polycystic Kidney Disease

• contact British Kidney Patient Association under Kidney

Polycystic Ovary Disease

• VERITY
• also Women's Health under Women's Health
• Further Reading

Polydactyl Syndrome

• contact LMBBS under Laurence-Moon-Bardet-Beidl

Polymicrogyria

• contact Lissencephaly Contact Group under Lissencephaly

Polymyositis

• contact Myositis Support Group under Dermatomyositis/Myositis

Polyneuropathy

• contact GBS Support Group under Guillain-Barre

Polyostotic Fibrous Dysplasia

• contact Ollier's Disease Self-Help Group under Ollier's Disease

Pompe Disease

• contact Association for Glycogen Storage Diseases under Glycogen Storage Diseases

Porencephaly

• Further Reading

Porphyria

• British Porphyria Association
• Further Reading

Port Wine Stain

• contact Birthmark Support Group under Disfigurement

Post-Abortion Trauma

• see under Pregnancy advice (below)
• Further Reading

Post-Natal Depression/Post-Natal Illness

• contact Association for Post Natal Illness and Meet-A-Mum under Mothers
• Hypnosis Help for Post Natal Depression
• Veritee's PNI Web Site
• Further Reading

Post Traumatic Stress

• contact ASSIST and StressCare under Trauma

Post-Viral Syndrome

• see under Myalgic Encephalomyelitis

Potters Syndrome

• Potters Syndrome Contact Group c/o Contact a Family under Family

Prader-Willi Syndrome

• Prader-Willi Syndrome Association (UK)
• Further Reading

Preconceptual Care

• ForeSight

Pre-Eclampsia

• APEC (Action on Pre-EClampsia)
• PETS (Pre-Eclampsia Toxaemia Society)
• Further Reading

Pregnancy Advice

• ARC (Antenatal Results and Choices)
• British Pregnancy Advisory Service
• Hypnosis Help
• LIFE
• Marie Stopes International
• National Childbirth Trust
• Tommy's
• WellBeing
• Further Reading (Toxoplasmosis)

Premature Babies/Special Care

• BLISS
• also Tommy's and WellBeing (above)
• Further Reading

Premature Menopause/Premature Ovarian Failure

• contact Daisy Network under IVF

Premature Sexual Maturation

• contact PSM Group, c/o CGF under Growth

Premenstrual Syndrome

• NAPS (National Association for Premenstrual Syndrome)
• PREMSOC (PreMenstrual Society), Tel 01932 872 560
• also Women's Health under Women's Health
• Hypnosis Help
• Further Reading

Pressure Sores

• Wound Care Society
• Further Reading (Pressure Sores)
• Further Reading (Leg Ulcers)

Primary Biliary Cirrhosis

• contact PBC Foundation under Liver

Primary Ciliary Dyskensia

• PCD Family Support Group

Primary Red Cell Anaemia

• contact Diamond-Blackfan Support Group under Diamond-Blackfan

Primary Sclerosing Cholangitis

• Primary Sclerosing Cholangitis Support Group
• Primary Sclerosing Cholangitis Trust
• Further Reading

Professional Abuse (by health and care workers)

• WITNESS
• Further Reading

Progressive Supranuclear Palsy

• PSP Association
• Further Reading

Prolactinoma

• contact Pituitary Foundation under Pituitary Disorders

Prolapse (Uterine or Vaginal)

• see Women's Health under Women's Health

Prolonged Expiratory Apnoea

• contact STARS under Reflex Anoxic Seizures

Prostate

• Prostate Help Association
• Prostate Research Campaign
• also Prostate Cancer Charity under Cancer
• Further Reading

Pseudoachondroplasia

• contact Restricted Growth Association under Growth

Pseudohurler Polydystrophy

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Pseudoxanthoma Elasticum

• PXE Support Group - PiXiE

Psoriasis

• Psoriasis Association
• Psoriasis Help
• Skincell International
• also Skinship (UK) under Dermatological Problems
• Further Reading

Psoriatic Arthropathy

• PAPAA (Psoriasis and Psoriatic Arthritis Association)

Pudendal Neuralgia

• contact Pelvic Pain Support Network under Pelvic Pain

Pulmonary Fibrosis

• contact British Lung Foundation under Lung

Purine Metabolic Diseases

• contact PUMPA under Metabolic Diseases

Rape

• see under Sexual Abuse and Rape

Rare Chromosome Disorders

• UNIQUE (Rare Chromosome Disorders Support Group)

Raynaud's

• Raynaud's & Scleroderma Association
• Further Reading (Raynaud's Disease)
• Further Reading (Erthromelalgia)
• Further Reading (Morphea)
• Further Reading (Scleroderma)
• Further Reading (Systemic Sclerosis)

Reflex Anoxic Seizure/Reflex Asystolic Syncope

• STARS (Syncope Trust And Reflex Anoxic Seizure)
• Further Reading (Fainting)
• Further Reading (Neurally Mediated Syncope)

Reflex Sympathetic Dystrophy/Complex Regional Pain Syndrome

• RSD UK
• Further Reading (Complex Regional Pain Syndrome)

Refsum Disease

• see under Leukodystrophy

Reifenstein Syndrome

• contact Androgen Insensitivity Support Group under Androgen Insensitivity

Relapsing Polychondritis

• Relapsing Polychondritis UK

Rendu-Osler-Weber Syndrome

• contact Telangiectasia Group under Telangiectasia

Repetitive Strain Injury

• London RSI Support Group
• RSI Action
• article
• Further Reading

Restless Leg Syndrome

• contact Ekbom's Support Group under Ekbom

Restricted Growth

• see under Growth

Retinitis Pigmentosa

• British Retinitis Pigmentosa Society
• Further Reading

Retinoblastoma

• Childhood Eye Cancer Trust
• Further Reading

Rett Syndrome

• Rett Syndrome Association (UK)
• Further Reading

Reye's Syndrome

• National Reye's Syndrome Foundation
• Further Reading

Rheumatism

• see under Arthritis

Rickets

• contact XHL Network for X-Linked Hypophosphatemic Rickets
• Further Reading

Riley-Day Syndrome

• contact Dysautonomia Society under Dysautonomia

Road Death and Injury

• CADD (Campaign Against Drinking and Driving)
• RoadPeace
• SCARD (Support & Care After Road Death & injury)

Rosacea

• contact Acne Support Group under Acne

Rubinstein Taybi Syndrome

• RTS Support Group

Russell-Silver Syndrome

• contact Silver-Russell Group c/o Child Growth Foundation under Growth

Sacral Agenesis

• Sacral Agenesis Support Group, Tel 023 8084 2661

Sadistic Abuse/Satanic Abuse

• SAFE (Supporting Survivors of Sadistic Abuse)
• Further Reading

Saethre-Chotzen Syndrome

• contact Headlines under Craniofacial

Saggital Synostosis

• contact Headlines under Craniofacial

Salaam Seizures

• contact West Syndrome Support Group under West Syndrome

Sanfillipo Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Sarcoidosis

• contact SILA under Lung

Scabies

• Further Reading

Scaphocephaly

• see under Plagiocephaly

Scheie Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Schilder's Disease

• contact Adrenoleukodystrophy Support under Adrenoleukodystrophy

Scheurmann Disease

• contact Perthes Association under Perthes Disease

Schizophrenia

• Rethink
• Further Reading

School Phobia

• Education Otherwise
• Hypnosis Help
• contact Parentline Plus under Parents
• see under Bullying if this is the cause of the phobia
• Further Reading

Scleroderma

• contact Raynaud's and Scleroderma Association under Raynauds's

Scoliosis

• Scoliosis Association (UK)
• Scoliosis Support Site
• Further Reading

Seasonal Affective Disorder

• SAD Association
• Further Reading

Second Arch Syndrome

• see under Treacher-Collins

Sed Tarda

• contact Perthes Association under Perthes Disease
• also Restricted Growth Association under Growth

Self Injury

• Hypnosis Help
• LifeSigns
• National Self Harm Network
• Self Injury & Related Issues
• Further Reading

Separation

• see under Divorce

Seriously Ill Children

• contact ACT under Carers
• Action for Sick Children
• Dreams Come True
• Nigel Clare Network Trust
• Rainbow Trust
• react
• Sick Children's Trust
• Zoe's Place Baby Hospice

Severs Disease

• contact Perthes Association under Perthes Disease

Sex and Disability

• contact Outsiders under Loneliness

Sexual Abuse and Rape

• ISO-SAC (In Support of Sexually Abused Children), Tel 020 7284
• MOSAC
• Rape Crisis (England and Wales)
• Rape Crisis Centres
• Survivors UK
• also contact LifeLine under Violence in the Home
• Further Reading

Sexaholism

• Hypnosis Help
• Sexaholics Anonymous
• Sex and Love Addicts Anonymous UK
• Further Reading

Sexual Dysfunction

• Sexual Dysfunction Association
• Hypnosis Help
• Further Reading

Sexually Transmitted Infections

• see Women's Health under Women's Health

Sheehan's Syndrome

• contact Pituitary Foundation under Pituitary Disorders

Shingles and PHN

• Shingles Support Society
• Further Reading

Shoplifting

• Crisis Counselling for Alleged Shoplifters, Tel 020 8954 8987
• Further Reading

Shprintzen Syndrome

• contact Max Appeal under Chromosome 22q 11

Shwachman-Diamond Syndrome

• Shwachman-Diamond Support
• Further Reading

Shy Bladder Syndrome

• UK Paruresis Association
• Further Reading

Sialic Acid Storage Disease

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Sickle Cell

• Sickle Cell Society
• Further Reading

Silver-Russell Syndrome

• contact Silver-Russell Syndrome Support Group c/o Child Growth Foundation under Growth

Single Parents

• One Parent Families
• One Parent Families Scotland
• Only Dads
• Single Parent Action Network and new website

Sjögren's Syndrome

• British Sjögrens Syndrome Association

Skeletal Dysplasia

• Skeletal Dysplasia Group
• also contact Ollier's Disease Self Help Group under Ollier's Disease

Skin Cancer

• contact MARC'S Line under Cancer

Skin Disorders

• contact SkinShip UK under Dermatological Problems

Skin Laser Treatment

• contact International Disfigurement Guidance Centre under Disfigurement

Sleeping Problems

• Hypnosis Help
• Sleep Matters
• Further Reading

Sleep Apnoea/Snoring

• British Snoring and Sleep Apnoea Association
• Sleep Apnoea Trust
• Further Reading

Sleeping Pill Addiction

• CITA (Council for Involuntary Tranquilliser Addiction)
• TASHA
• Further Reading (Benzodiazepine Addiction)

Sly Syndrome

• contact Society for Mucopolysaccharide Diseasess under Metabolic Diseases

Smith-Lemli Opitz Syndrome

• contact CaF under Family

Smith-Magenis Syndrome

• Smith-Magenis Syndrome Group

Smoking/Nicotine Addiction

• Hypnosis Help
• Nicotine Anonymous
• QUIT
• Further Reading

Solvent Abuse

• Re-Solv
• Solvent Abuse Resource Group
• Further Reading

Sotos Syndrome

• contact Sotos Syndrome Support Group c/o CaF under Family

Spasmodic Torticollis

• contact Dystonia Society under Dystonia

Special Educational Needs

• see also under Learning Difficulties
• BREAK
• Care Choices
• Children's Trust
• Elizabeth Fitzroy Support
• IPSEA
• NASEN (National Association for Special Educational Needs)
• National Portage Association
• Network 81
• Parents for Inclusion
• Values Into Action
• Further Reading

Speech Problems/Stammering

• AFASIC
• Aidis Trust
• British Stammering Association
• Hypnosis Help
• I CAN
• Fluency Trust
• Michael Palin Centre for Stammering Children
• Paget Gorman Society
• Talking Point
• Further Reading

Spina Bifida

• ASBAH (Association for Spina Bifida And Hydrocephalus)
• Further Reading (Spina Bifida)
• Further Reading (Anencephaly)
• Further Reading (Dandy-Walker Syndrome)
• Further Reading (Hydrocephalus)

Spinal Bulbar Muscular Atrophy

• SBMA UK

Spinal Curvature

• see under Scoliosis

Spinal Injury and Tumour

• Aspire
• Back-Up Trust
• also Brain and Spine Foundation under Brain Tumour
• Spinal Injuries Association
• Further Reading

Spinal Muscular Atrophy

• Jennifer Trust for Spinal Muscular Atrophy
• Further Reading

Spinocerebellar Degeneration

• contact Ataxia Group under Ataxia

Spondo-Epiphyseal Dysplasia Tarda

• contact Perthes Association under Perthes Disease
• also Restricted Growth Association under Growth

Steroid Problems/Steroid Abuse

• GASP (Group Action into Steroid Prescriptions)
• Further Reading

Stepfamilies

• contact ParentLine Plus and Both Parents Forever under Parents

Stickler Syndrome

• Stickler Syndrome Support Group
• Further Reading

Stillbirth

• SANDS (Stillbirth And Neonatal Death Society)
• also Tommy's under Pregnancy Advice
• Further Reading

Stoma

• Colostomy Association
• Ileostomy & Internal Pouch Support Group
• Urostomy Association
• Further Reading (Stoma)
• Further Reading (Colostomy)
• Further Reading (Ileostomy)
• Further Reading (Intestinal Disorders)

Stress

• Hypnosis Help
• Stress, Anxiety & Depression Helpline
• Further Reading

Stroke

• Different Strokes (for Young Stroke Survivors)
• Stroke Association
• also Speakability under Aphasia
• also Chest Heart and Stroke Scotland under Heart
• Further Reading (Stroke)
• Further Reading (Aphasia)

Strumpell-Lorraine Syndrome

• contact FSP Self Help Group under Familial Spastic Paraplegia

Sturge Weber Syndrome

• Sturge Weber Foundation
• Further Reading

Sudanophilic Leukodystrophy

• contact Adrenoleukodystrophy Support under Adrenoleukodystrophy

Sudden Adult Death Syndrome

• SADS UK
• also Cardiac Risk in the Young under Heart
• Further Reading

Sudden Infant Death Syndrome

• FSID (Foundation for the Study of Infant Deaths)
• Further Reading

SUDEP (Sudden Unexpected Death in Epilepsy)

• see Epilepsy Bereaved under Epilepsy

Suicide

• contact Shadow of Suicide c/o Compassionate Friends under Bereavement, for young suicide prevention see HOPELine UK also under Bereavement.  The Samaritans can be found under Helplines

Supra-Bulbar Palsy

• contact Worster Drought Syndrome Contact Group under Worster-Drought

Syncopes

• contact STARS  under Reflex Anoxic Seizure

Syringomyelia

• The Ann Conroy Trust
• Further Reading

Systemic Lupus Erythmatous

• contact Lupus UK under Lupus
• also Arthritis Care under Arthritis
• also Raynaud's & Scleroderma Association under Raynaud's

Systemic Sclerosis

• contact Raynaud's & Scleroderma Association under Raynaud's

Takayasu's Arteritis

• contact Stuart Strange Vasculitis Trust under Wegeners Granulamatosis

Talipes

• contact STEPS under Lower Limb Abnormalities

Tar Syndrome

• Tar Syndrome Support Group

Tay-Sachs Disease

• contact CLIMB under Metabolic Diseases

Telangiectasia

• Telangiectasia Self Help Group
• Further Reading

Tension Myalgia

• contact Fibromyalgia Association and Stiff UK under Fibromyalgia

Testes (Absence of/Torsion of)

• contact Anorchidism Support Group under Anorchidism

Testicular Cancer

• contact Wessex Cancer Trust under Cancer

Testicular Feminisation Syndrome

• see under Androgen Insensitivity

Testosterone Deficiency

• Androids Testosterone Deficiency Centre
• Further Reading

Thalassaemia

• UK Thalassaemia Society
• see also under Sickle Cell
• Further Reading (Thalassaemia)
• Further Reading (Cooley's Anaemia)

Thalidomide

• Thalidomide Society
• Thalidomide Trust
• Further Reading

Thromboasthenia

• contact Tar Syndrome Support Group under Tar Syndrome

Thrombosis

• Lifeblood

Thyroid

• British Thyroid Foundation
• Thyroid UK
• Further Reading (Thyroid)
• Further Reading (Hyperthyroidism)
• for Thyroid Cancer see under Cancer

Thyroid Eye Disease

• Thyroid Eye Disease Charitable Trust
• Further Reading

Tinnitus

• British Tinnitus Association
• Hypnosis Help
• Further Reading

Tourette Syndrome

• Tourettes Action
• Hypnosis Help
• Further Reading

Toxic Shock Syndrome

• Toxic Shock Syndrome Information Service
• Further Reading

Toxocariasis

• Community Hygiene Concern
• Further Reading

Toxoplasmosis

• contact Tommy's under Pregnancy Advice

Tracheo-Oesphageal Fistula

• TOFS

Tracheostomies

• Aid for Children with Tracheostomies
• Further Reading

Transplantation

• see under Organ Transplantation

Transverse Myelitis

• contact Guillain-Barre Syndrome Support Group under Guillain-Barre

Tranquilliser Addiction

• Council for Involuntary Tranquilliser Addiction
• TASHA

Transexuals/Transgender/Gender Identity

• Beaumont Society
• Depend
• FTM Network
• Mermaids
• Press for Change
• Women of the Beaumont Society
• Further Reading

Trauma/Disaster

• ASSIST
• Register of Trauma Specialists
• Hypnosis Help
• Further Reading (Trauma)
• Further Reading (Post Traumatic Stress)

Treacher Collins

• Treacher Collins Family Support Group
• Further Reading (Miller Fisher Syndrome)

Trigeminal Neuralgia

• Trigeminal Neuralgia Association
• Further Reading

Trisomy

• Soft UK

Tropical Spastic Paraparesis

• Further Reading

Tuberous Sclerosis

• Tuberous Sclerosis Association
• Further Reading

Turner Syndrome

• Turner Syndrome Support Society

Ulcerative Colitis

• contact National Association for Colitis and Crohn's Disease under Crohn's Disease

Urostomy

• contact Urostomy Association under Stoma

Usher Syndrome

• contact Sense under Deaf/Blind

Vaccination/Vaccine Damage

• JABS
• The Informed Parent
• Justice for Vaccine Damaged Children, Tel 0117 955 7818
• Victims of Vaccination Support Group, Tel 0121 243 7759

Valsalva Syncope

• contact STARS under Reflex Anoxic Seizure

Varicose Veins

• contact Circulation Foundation (below)

Vascular Dementia

• contact Alzheimer's Society under Alzheimers

Vascular Disease

• Circulation Foundation
• Further Reading (Vascular Disease)
• Further Reading (Aneurysm)
• Further Reading (Deep Vein Thrombosis)
• Further Reading (Leg Ulcers)
• Further Reading (Varicose Veins)

Vasculitis

• Voice4Vasculitis
• also contact Stuart Strange Vasculitis Trust under Wegeners Granulamatosis
• also Arthritis Care under Arthritis
• also Polyarteritis (Vasculitis) Contact under Polyarteritis

Vaso Vagal Syndrome

• contact STARS under Reflex Anoxic Seizure

Velo-Cardiofacial Syndrome

• contact Max Appeal under Chromosome 22q 11

Vesico-Intestinal Fissure

• contact GEEPS under Bowel Defects

Victims of Crime

• Victim Support

Violence in the Home

• Refuge
• Women's Aid Federation of England
• Further Reading

Viral Fatigue Syndrome

• see under Myalgic Encephalomyelitis

Visceromegaly

• see under Beckwith-Wiedemann

Vitiligo

• Vitiligo Society
• Further Reading

Von Gierke Disease

• contact Association for Glycogen Storage Disease under Glycogen

Von Hippel-Lindau Disease

• VHL Contact Group
• Further Reading

Von Recklinghausen's Disease

• contact Neurofibromatosis Association under Neurofibromatosis

Von Willebrand Disease

• contact Haemophilia Society under Haemophilia

Vulval Vestibulitis/Vulval Pain

• Vulval Pain Society
• Further Reading
• also contact Pelvic Pain Support Network under Pelvic Pain and Women's Health under Women's Health

Waardenburg Syndrome

• contact National Deaf Children's Society

Walker Warburg Syndrome

• contact Lissenecephaly Contact Group under Lissencephaly

Weaver Syndrome

• contact Sotos Syndrome Support Group c/o Child Growth Foundation under Growth

Wegeners Granulamatosis

• Stuart Strange Vasculitis Trust
• Further Reading (Vasculitis)
• Further Reading (Giant Cell Arteritis)
• Further Reading (Hypersensitive Arteritis)
• Further Reading (Vasculitis)

Werdig-Hoffman

• contact Jennifer Trust under Spinal Muscular Atrophy

West Syndrome

• West Syndrome Support Group
• Further Reading

White Breath-Holding Seizures

• contact STARS under Reflex Anoxic Seizure

Widows

• National Association of Widows
• War Widows Association
• WAY (Widowed and Young) Foundation

Williams Syndrome

• Williams Syndrome Foundation
• Further Reading

Wilson's Disease

• Wilson's Disease Support Group
• Further Reading

Winchester Syndrome

• contact Society for Mucopolysaccharide Diseases under Metabolic Diseases

Wiskott-Aldrich Syndrome

• contact Primary Immunodeficiency Association under Immune Deficiency

Wolf-Hirschorn Syndrome

• WHSSG (Wolf-Hirschorn Syndrome Support Group)

Wolfram Syndrome

• contact Pituitary Foundation under Pituitary Disorders

Women's Health

• Endometriosis UK
• Hysterectomy Association
• Threshold Women's Mental Health Infoline
• Women's Health Concern
• for Endometriosis contact Endometriosis UK under Endometriosis
• Further Reading (Cervical Cancer)
• Further Reading (Endometrial Cancer)
• Further Reading (Gynaecological Problems)
• Further Reading (Human Papilloma Virus)
• Further Reading (Hysterectomy)
• Further Reading (Hormone Replacement Therapy)
• Further Reading (Menopause)
• Further Reading (Obstretic Disorders)
• Further Reading (Ovarian Cysts)
• Further Reading (Pelvic Inflammatory Disease)
• Further Reading (Sexually Transmitted Infections)
• Further Reading (Uterine Cancer)
• Further Reading (Vulval Cancer)

Worster-Drought Syndrome

• Worster-Drought Syndrome Support Group

XO Syndrome

• contact Turner Syndrome Support Society under Turner Syndrome

Xeroderma Pigmentosum

• XP Support Group
• Further Reading

X-Linked Agammaglobulinaemia

• contact Primary Immunodeficiency Association under Immune Deficiency

XXY Syndrome

• contact Klinefelter's Organisation under Klinefelter's Syndrome