Wolfram Syndrome UK (WSUK) is the only charity and website in the UK for this...
Patient Groups / UK / 907 views / Popular
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 632 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 625 views / Popular
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...
Patient Groups / UK / 897 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 628 views / Popular
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 934 views / Popular
The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...
Patient Groups / UK / 817 views / Popular
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 781 views / Popular
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 791 views / Popular
The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...
Patient Groups / 470 views
RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...
Patient Groups / 280 views
There are many children born in the UK and across the world with a rare...
Patient Groups / 541 views / Popular
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 902 views / Popular
We are the only organisation in the UK & Ireland dedicated to improving the lives...
Patient Groups / 477 views
myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...
Patient Groups / 915 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 826 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 884 views / Popular
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 799 views / Popular
The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...
Patient Groups / 489 views
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 911 views / Popular