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Alternating Hemiplegia of Childhood (AHC) UK in a UK charity for those living with or...

 Patient Groups / 176 views

The Neurofibromatosis Association, trading as Nerve Tumours UK, funds a unique Specialist Support Network to...

 Patient Groups / 465 views

RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...

 Patient Groups / 853 views / Popular

Alström Syndrome UK (ASUK) is a charity who provide information, support and advice for individuals...

 Patient Groups / 912 views / Popular

The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...

 Patient Groups / 1033 views / Popular

CJD is one of a group of rare and invariably fatal diseases called prion diseases,...

 Patient Groups / 1336 views / Popular

A UK-registered charity, AMEND is a patient group providing information and support services to families...

 Patient Groups / 964 views / Popular

The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...

 Patient Groups / 1106 views / Popular

We are the only organisation in the UK & Ireland dedicated to improving the lives...

 Patient Groups / 1084 views / Popular

The Fragile X Society aims to improve the lives of those affected by Fragile X...

 Patient Groups /  UK / 1185 views / Popular

DEBRA is the national charity and patient support organisation for people living with or directly...

 Patient Groups /  UK / 1078 views / Popular

Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...

 Patient Groups /  UK / 981 views / Popular

There are many children born in the UK and across the world with a rare...

 Patient Groups / 1029 views / Popular

Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...

 Patient Groups /  Ireland / 1102 views / Popular

CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...

 Patient Groups /  UK / 965 views / Popular

Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...

 Patient Groups /  UK / 1332 views / Popular

Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...

 Patient Groups /  UK / 1236 views / Popular

Alex TLC is a trusted and experienced organisation offering support and information for all those...

 Patient Groups /  London / 1316 views / Popular

Designed to provide easily accessible and up to date information for anyone affected by genetic,...

 Patient Groups / 1903 views / Popular