The Fragile X Society aims to improve the lives of those affected by Fragile X...
Patient Groups / UK / 59 views
DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had Epidermolysis Bullosa (EB),...
Patient Groups / UK / 77 views
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Patient Groups / UK / 59 views
There are many children born in the UK and across the world with a rare...
Patient Groups / 76 views
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 66 views
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 66 views
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 96 views
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 74 views
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 142 views
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 146 views
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 155 views
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 199 views
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 200 views
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 188 views
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 194 views
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 360 views
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 201 views
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 329 views
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 223 views
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 235 views