A UK-registered charity, AMEND is a patient group providing information and support services to families...
Patient Groups / 34 views
The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...
Patient Groups / 66 views
We are the only organisation in the UK & Ireland dedicated to improving the lives...
Patient Groups / 58 views
The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 172 views
DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had Epidermolysis Bullosa (EB),...
Patient Groups / UK / 159 views
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 160 views
There are many children born in the UK and across the world with a rare...
Patient Groups / 178 views
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 187 views
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 186 views
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 241 views
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 197 views
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 303 views
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 265 views
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 346 views
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 333 views
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 292 views
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 304 views
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 322 views
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 495 views
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 320 views