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Wolfram Syndrome UK (WSUK) is the only charity and website in the UK for this...

 Patient Groups /  UK / 874 views / Popular

Usher syndrome (USH) is a rare, genetically inherited disease and its main symptoms are sensorineural...

 Patient Groups /  Ireland / 606 views / Popular

Our mission is to improve the diagnosis, treatment and care of individuals with CACNA1C-related disorders...

 Patient Groups /  UK / 593 views / Popular

The Pituitary Foundation is a national support and information organisation for pituitary patients, their families,...

 Patient Groups /  UK / 860 views / Popular

NSPKU's goal is to support individuals and families living with (Phenylketonuria) PKU across the UK...

 Patient Groups /  UK / 608 views / Popular

The Ectodermal Dysplasia Society is a charity dedicated to improving the health and well-being of...

 Patient Groups /  UK / 913 views / Popular

The CATS Foundation supports families affected by Tay-Sachs and Sandhoff disease. The CATS Foundation was...

 Patient Groups /  UK / 780 views / Popular

The TAPS Support Foundation is a registered charity dedicated to changing the way monochorionic twin...

 Patient Groups /  UK / 748 views / Popular

SOFT UK was founded in 1990 by Christine Rose and Jenny Robbins. As mothers, they...

 Patient Groups /  UK / 758 views / Popular

The Rare Diseases Society Nepal is the umbrella organisation for the rare disease patients of...

 Patient Groups / 437 views

RACC – UK is led by an enthusiastic and motivated Board of Trustees with a...

 Patient Groups / 251 views

There are many children born in the UK and across the world with a rare...

 Patient Groups / 521 views / Popular

Primary Ciliary Dyskinesia (PCD) is a rare genetic disease affecting 1 in 15,000 people in...

 Patient Groups /  UK / 872 views / Popular

We are the only organisation in the UK & Ireland dedicated to improving the lives...

 Patient Groups / 442 views

myaware provides expert support and advice for people affected by myasthenia. In February 2022 M4RD...

 Patient Groups / 886 views / Popular

Muscular Dystrophy UK (previously known as the Muscular Dystrophy Campaign) is the charity bringing individuals,...

 Patient Groups /  UK / 795 views / Popular

The MPS Society provides support to families affected by one of 25 rare, life limiting...

 Patient Groups /  UK / 851 views / Popular

Founded in 1981, Metabolic Support UK are the leading patient organisation for Inherited Metabolic Disorders...

 Patient Groups /  UK / 773 views / Popular

The Loeys-Dietz Syndrome Foundation Canada is a Canadian charitable organization dedicated to the promotion of...

 Patient Groups / 459 views

Huntington's Disease Association exists to help people living with Huntington's disease to live a better...

 Patient Groups /  UK / 879 views / Popular

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