Supporting families affected by Chronic Granulomatous Disorder (CGD) in the UK. In March 2022 M4RD...
Patient Groups / UK / 835 views / Popular
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 915 views / Popular
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 800 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 865 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 1018 views / Popular
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 803 views / Popular
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 952 views / Popular
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 867 views / Popular
ArchAngel MLD Trust was established to support medical teams around the world who are working...
Patient Groups / UK / 690 views / Popular
The DFSG is a UK national charity, run by families for families affected by Duchenne...
Patient Groups / UK / 695 views / Popular
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 931 views / Popular
An immersive experience organised and funded by Kyowa Kirin to tell the stories of real people...
Learning Resources / 599 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 908 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 643 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 843 views / Popular
Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%. A...
Journals and Articles / 586 views / Popular
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Learning Resources / 2494 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 639 views / Popular
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 814 views / Popular
CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...
Patient Groups / UK / 540 views / Popular