Huntington's Disease Association exists to help people living with Huntington's disease to live a better...
Patient Groups / UK / 922 views / Popular
At the beginning of the COVID-19 pandemic of early 2020, a group of concerned advocates...
Journals and Articles / 1037 views / Popular
Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%. A...
Journals and Articles / 580 views / Popular
Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...
Patient Groups / UK / 805 views / Popular
The MPS Society provides support to families affected by one of 25 rare, life limiting...
Patient Groups / UK / 893 views / Popular
Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...
Patient Groups / UK / 833 views / Popular
myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...
Patient Groups / 922 views / Popular
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 907 views / Popular
There are many children born in the UK and across the world with a rare...
Patient Groups / 546 views / Popular
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Learning Resources / 2456 views / Popular
An immersive experience organised and funded by Kyowa Kirin to tell the stories of real people...
Learning Resources / 594 views / Popular
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 794 views / Popular
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 788 views / Popular
The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...
Patient Groups / UK / 826 views / Popular
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 942 views / Popular
This toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis...
Rare Disease Guidelines / 1798 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 635 views / Popular
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...
Patient Groups / UK / 907 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 629 views / Popular
Neurofibromatosis type 1 (NF1) is a neurogenetic condition that approximately 1 in every 2,700 people...
Learning Resources / 1613 views / Popular