Contact Us    Useful Links   Order Directory

To search this page press the Control and F keys at the same time.  Home key returns you to the top.

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 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 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

• CIRCUIT
• 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