RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...
Patient Groups / 159 views
Alström Syndrome UK (ASUK) is a charity who provide information, support and advice for individuals...
Patient Groups / 200 views
The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...
Patient Groups / 303 views
CJD is one of a group of rare and invariably fatal diseases called prion diseases,...
Patient Groups / 451 views
A UK-registered charity, AMEND is a patient group providing information and support services to families...
Patient Groups / 321 views
The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...
Patient Groups / 357 views
We are the only organisation in the UK & Ireland dedicated to improving the lives...
Patient Groups / 314 views
The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 473 views
DEBRA is the national charity and patient support organisation for people living with or directly...
Patient Groups / UK / 399 views
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 404 views
There are many children born in the UK and across the world with a rare...
Patient Groups / 437 views
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 480 views
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 416 views
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 617 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 507 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 633 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 505 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 703 views / Popular
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 718 views / Popular
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 551 views / Popular