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

 Patient Groups / 15 views / New

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

 Patient Groups / 380 views

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

 Patient Groups / 424 views

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

 Patient Groups / 586 views / Popular

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

 Patient Groups / 807 views / Popular

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

 Patient Groups / 566 views / Popular

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

 Patient Groups / 611 views / Popular

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

 Patient Groups / 600 views / Popular

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

 Patient Groups /  UK / 778 views / Popular

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

 Patient Groups /  UK / 645 views / Popular

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

 Patient Groups /  UK / 618 views / Popular

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

 Patient Groups / 648 views / Popular

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

 Patient Groups /  Ireland / 730 views / Popular

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

 Patient Groups /  UK / 623 views / Popular

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

 Patient Groups /  UK / 903 views / Popular

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

 Patient Groups /  UK / 731 views / Popular

Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...

 Patient Groups /  UK / 934 views / Popular

NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...

 Patient Groups /  UK / 726 views / Popular

The MPS Society provides support to families affected by one of 25 rare, life limiting...

 Patient Groups /  UK / 994 views / Popular

Huntington's Disease Association exists to help people living with Huntington's disease to live a better...

 Patient Groups /  UK / 1035 views / Popular

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