Posted 2 days ago
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 3 views / New
Posted 2 days ago
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 4 views / New
Posted 1 month ago
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 53 views
Posted 1 month ago
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 51 views
Posted 1 month ago
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 46 views
Posted 2 months ago
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 66 views
Posted 2 months ago
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 113 views
Posted 2 months ago
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 61 views
Posted 2 months ago
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 97 views
Posted 2 months ago
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 65 views
Posted 2 months ago
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 74 views
Posted 2 months ago
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 101 views
Posted 2 months ago
Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
Patient Groups / UK / 62 views
Posted 2 months ago
Behçet’s UK represents all Behçet’s patients in the UK including those yet to be diagnosed. We...
Patient Groups / UK / 88 views
Posted 2 months ago
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...
Patient Groups / UK / 77 views
Posted 2 months ago
Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...
Patient Groups / UK / 76 views
Posted 2 months ago
The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...
Patient Groups / UK / 64 views
Posted 2 months ago
Cystinosis is a rare inherited disease occurring in about 1 in 200,000 births within developed...
Patient Groups / UK / 68 views
Posted 2 months ago
Birt-Hogg-Dubé syndrome is an inherited condition, characterised by the development of fibrofolliculomas (benign skin tumours),...
Patient Groups / UK / 71 views
Posted 2 months ago
Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...
Patient Groups / UK / 61 views