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The Fragile X Society aims to improve the lives of those affected by Fragile X...

 Patient Groups /  UK / 59 views

DEBRA was established in 1978 by Phyllis Hilton, whose daughter Debra had Epidermolysis Bullosa (EB),...

 Patient Groups /  UK / 77 views

Neurofibromatosis type 1 (NF1) is a genetic disorder with many and varied clinical manifestations, its...

 Patient Groups /  UK / 59 views

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

 Patient Groups / 76 views

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

 Patient Groups /  Ireland / 66 views

CAUK was founded in 2005 by Dr Ian Stuart. Ian had a bleed from a...

 Patient Groups /  UK / 66 views

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

 Patient Groups /  UK / 96 views

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

 Patient Groups /  UK / 74 views

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

 Patient Groups /  UK / 142 views

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

 Patient Groups /  UK / 146 views

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

 Patient Groups /  UK / 155 views

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

 Patient Groups /  UK / 199 views

The DFSG is a UK national charity, run by families for families affected by Duchenne...

 Patient Groups /  UK / 200 views

ArchAngel MLD Trust was established to support medical teams around the world who are working...

 Patient Groups /  UK / 188 views

Autoinflammatory UK is the UK's oldest and largest patient-run safe patient support group for patients...

 Patient Groups /  UK / 194 views

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

 Patient Groups /  UK / 360 views

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

 Patient Groups /  UK / 201 views

ALK-positive lung cancer is a relatively rare form of lung cancer caused by the abnormal...

 Patient Groups /  UK / 329 views

Whether you’re directly affected by Aicardi-Goutières syndrome, are interested to know more about the condition...

 Patient Groups /  UK / 223 views

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

 Patient Groups /  UK / 235 views

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