Alternating Hemiplegia of Childhood (AHC) UK in a UK charity for those living with or...
Patient Groups / 5 views / New
The Neurofibromatosis Association, trading as Nerve Tumours UK, funds a unique Specialist Support Network to...
Patient Groups / 347 views
RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...
Patient Groups / 700 views / Popular
Alström Syndrome UK (ASUK) is a charity who provide information, support and advice for individuals...
Patient Groups / 715 views / Popular
The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...
Patient Groups / 888 views / Popular
CJD is one of a group of rare and invariably fatal diseases called prion diseases,...
Patient Groups / 1139 views / Popular
A UK-registered charity, AMEND is a patient group providing information and support services to families...
Patient Groups / 819 views / Popular
The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...
Patient Groups / 955 views / Popular
We are the only organisation in the UK & Ireland dedicated to improving the lives...
Patient Groups / 924 views / Popular
The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 1066 views / Popular
DEBRA is the national charity and patient support organisation for people living with or directly...
Patient Groups / UK / 937 views / Popular
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 878 views / Popular
There are many children born in the UK and across the world with a rare...
Patient Groups / 893 views / Popular
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 983 views / Popular
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 853 views / Popular
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 1194 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 1050 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 1196 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 952 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 1276 views / Popular