Wolfram Syndrome UK (WSUK) is the only charity and website in the UK for this...
Patient Groups / UK / 909 views / Popular
Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...
Patient Groups / Ireland / 634 views / Popular
Neurofibromatosis type 1 (NF1) is a neurogenetic condition that approximately 1 in every 2,700 people...
Learning Resources / 1610 views / Popular
Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...
Patient Groups / UK / 628 views / Popular
The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...
Patient Groups / UK / 901 views / Popular
NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...
Patient Groups / UK / 631 views / Popular
This toolkit sets out the latest thinking in EDS, including the new approaches to diagnosis...
Rare Disease Guidelines / 1796 views / Popular
The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...
Patient Groups / UK / 940 views / Popular
The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...
Patient Groups / UK / 821 views / Popular
The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...
Patient Groups / UK / 785 views / Popular
SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...
Patient Groups / UK / 792 views / Popular
An immersive experience organised and funded by Kyowa Kirin to tell the stories of real people...
Learning Resources / 593 views / Popular
The Royal Society of Medicine (RSM) is a leading provider of high-quality continuing postgraduate education...
Medical Institutions / London / 2088 views / Popular
Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...
Learning Resources / 2443 views / Popular
The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...
Patient Groups / 475 views
RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...
Patient Groups / 282 views
There are many children born in the UK and across the world with a rare...
Patient Groups / 544 views / Popular
PEM Friends is a patient led group for those suffering from the rare bullous diseases...
445 views
Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...
Patient Groups / UK / 905 views / Popular
We are the only organisation in the UK & Ireland dedicated to improving the lives...
Patient Groups / 482 views