Patient Support : Children - medical conditions

Action Duchenne

Action for Sick Children (Scotland)

ADDISS - The National Attention Deficit Disorder Information and Support Service

Adrenal Hyperplasia Network

AFASIC (speech problem support)

Aid for Children with Tracheostomies

ALD LIFE (adrenoleukodystrophy and adrenomyeloneuropathy support)

Anorchidism Support Group

ASBAH - Association for Spina Bifida And Hydrocephalus - ASBAH

Association for Glycogen Storage Disease (UK)

Association of Young People with ME

ATR-X Support Group

Barth Syndrome Trust

Batten Disease Family Association

BDF Newlife (Birth Defects)

Beckwith-Wiedemann Support Group

BEES - Bladder Exstrophy Epispadias Support

Ben Hardwick Fund (primary liver disease)

Bladder Exstrophy Family Association

Bobath Centre for Children with Cerebral Palsy

Breathe On UK

Brittle Bone Society

Cardiomyopathy Association

Caring Matters Now (Congenital Melanocytic Naevus)

CCCA - Children's Chronic Arthritis Association

Child Growth Foundation

Children with AIDS Charity (CWAC)

Children's Heart Association

Children's Heart Federation

Children's Kidney Trust

Children's Liver Disease Foundation

Children's Mitochondrial Disease Network

Children's Trust

CLAPA (Cleft Lip and Palate Association)

Climb - Children Living with Inherited Metabolic

CLubfoot.co.uk

Cohen Syndrome Support Group

Congenital Adrenal Hyperplasia Support Group

Congenital CMV Association

Contact a Family

Costello Kids

Cri du Chat Syndrome Support Group

Crohn's in Childhood Research Association - CICRA

Cyclical Vomiting Syndrome Association

Cystic Fibrosis Trust

Dancing Eye Syndrome Support Trust

DebRA (Epidermolysis Bullosa Support)

Down Syndrome Education Trust

Down's Heart Group

Down's Syndrome Association

Down's Syndrome Research Foundation

Down's Syndrome Scotland

Duchenne Family Support Group

Dysautonomia Society of Great Britain

Dyspraxia Foundation

Ear Foundation

Ectodermal Dysplasia Society

Epilepsy Action

Erb's Palsy Group

ERIC - Education & Resources for Improving Childhood Continence

Evelina Children's Heart Organisation

Eyeless Trust

Fetal Alcohol Syndrome Trust

Foetal Alcohol Syndrome Aware UK

Fragile X Society

Friends of Landau-Kleffner Syndrome

FSH Muscular Dystrophy Support Group

GEEPS - Gastroschisis Exomphalos Extrophies Parents Support

Gift - The Children's Transplant Charity

Glanzmann's Thrombasthenia Support Group

Goldenhar Family Support Group

HCPT - The Pilgrimage Trust

Headlines - The Craniofacial Support Group

Heartbeat Northern Ireland

Heartline Association

Hemi Help

Hirschsprung's & Motility Disorders Support Network

Homes Caring for Autism Ltd

Hyperekplexia Contact Group

Jennifer Trust for SMA (Spinal Muscular Atrophy)

Joint Epilepsy Council

Kawasaki Support Group

Klinefelter's Syndrome Association

Laurence-Moon-Bardet-Biedl Society

Lennox-Gastaut Syndrome Support Group

Lissencephaly Contact Group

Little Hearts Matter

Lowe Syndrome Association

Max Appeal

Meningitis Research Foundation

Micro and Anophthalmic Children's Society

Microcephaly Support Group

Mosaic Down Syndrome UK

Muscular Dystrophy Campaign

Myositis Support Group

NASPCS (for incontinent and stoma children)

National Blind Children's Society

National Deaf Children's Society

National Institute of Conductive Education

National Reye's Syndrome Foundation

NCYPE - National Centre for Young People with Epilepsy

Nephrotic Syndrome In Children Support Group

Neuroblastoma Society

NSPKU - National Society for Phenylketonuria

Ohdo Syndrome Family Network

Organic Acidaemias UK

Osteopetrosis Support Trust

Perthes Association (for Perthes Disease and other forms of osteochondritis)

Perthes Association Scotland

PINNT - Patients on Intravenous and Nasogastric Nutrition Therapy

Pituitary Foundation

Positive Parenting and Children

Potter's Syndrome Support & Contact Group

Prader-Willi Syndrome Association (UK)

Primary Ciliary Dyskinesia Family Support Group

Primary Immunodeficiency Association

Proteus Family Network UK

PUMPA - Purine Metabolic Patients' Association

Rett Syndrome Association of the UK

Rubinstein Taybi Syndrome Support

Scoliosis Association UK

Scope (for cerebral palsy and related disabilities)

Scottish Spina Bifida Association

Sense - Usher Section

Shwachman-Diamond Support

Sick Children's Trust

Sign - The National Society for Mental Health and Deafness

Smith-Magenis Syndrome Foundation

SNIP - Special Needs Information Point

Society for Mucopolysaccharide Diseases

SOFT (Support Organisation For Trisomy 18 & 13)

STARS - Syncope Trust and Reflex Anoxic Seizures

Strongbones Childrens Charitable Trust

Syndromes Without A Name

Talking Point

TAR Syndrome Support Group

Tay Sachs & Allied Disease Association

Tiny Tickers

TOFS - Tracheo Oesophageal Fistula Support

Tourette Syndrome (UK) Association

Treacher Collins Family Support Group

Tuberous Sclerosis Association

TummyTrouble - supporting children & families with gut motility disorders

Turner Syndrome Support Society

Unique (Rare Chromosome Disorder Support Group)

Williams Syndrome Foundation

Willow Foundation (support for seriously ill young adults)

Wolf Hirschhorn Syndrome Trust

Xeroderma Pigmentosum Support Group

XLH Network

Young ME Sufferers Trust











Disclaimer: Patient UK has no control of the content of the above links. Inclusion does not imply endorsement by Patient UK.

Advertise on this site


PS - Health and Poverty

Perhaps the biggest cause of ill health in the world is poverty. Help to Make Poverty History. For example, why not lend some of your money to disadvantaged communities to enable them to trade their way out of poverty through schemes such as Shared Interest.

See also MAKEPOVERTYHISTORY North East for details and links to campaigns against poverty.

^ Top of Page