The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...
Patient Groups / UK / 826 views / Popular
Alex TLC is a trusted and experienced organisation offering support and information for all those...
Patient Groups / London / 828 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 833 views / Popular
Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...
Patient Groups / UK / 856 views / Popular
Dedicated to improving the lives of those affected by Dravet Syndrome through support, education and...
Patient Groups / UK / 857 views / Popular
Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...
Patient Groups / UK / 858 views / Popular
Supporting patients & families living with PIK3CA Related Overgrowth Spectrum (PROS). In January 2022 M4RD...
Patient Groups / UK / 873 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 893 views / Popular
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...
Patient Groups / UK / 907 views / Popular
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 907 views / Popular
Wolfram Syndrome UK (WSUK) is the only charity and website in the UK for this...
Patient Groups / UK / 911 views / Popular
myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...
Patient Groups / 922 views / Popular
Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 922 views / Popular
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 942 views / Popular
Addison’s Disease is a rare endocrine condition where the adrenal glands cease to function, so that your...
Patient Groups / UK / 957 views / Popular
ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...
Patient Groups / UK / 1008 views / Popular
At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates...
Journals and Articles / 1037 views / Popular
Designed to provide easily accessible and up to date information for anyone affected by genetic,...
Patient Groups / 1490 views / Popular
People living with rare disease often face a diagnostic odyssey, typically waiting years for a...
Journals and Articles / 1571 views / Popular
Neurofibromatosis type 1 (NF1) is a neurogenetic condition that approximately 1 in every 2,700 people...
Learning Resources / 1613 views / Popular