Skip to content

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

 Patient Groups /  UK / 11 views / New

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

 Patient Groups /  UK / 11 views / New

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

 Patient Groups / 15 views / New

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

 Patient Groups /  Ireland / 10 views / New

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

 Patient Groups /  UK / 12 views / New

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

 Patient Groups /  UK / 18 views / New

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

 Patient Groups /  UK / 12 views / New

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

 Learning Resources / 13 views / New

Rare diseases are individually rare but collectively common, with a combined prevalence of 3.5–5.9%. A...

 Journals and Articles / 24 views

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

 Patient Groups /  UK / 84 views

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

 Patient Groups /  UK / 81 views

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

 Patient Groups /  UK / 86 views

An immersive experience organised and funded by Kyowa Kirin to tell the stories of real people...

 Learning Resources / 153 views

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

 Patient Groups /  UK / 129 views

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

 Patient Groups /  UK / 139 views

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

 Patient Groups /  UK / 129 views

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

 Patient Groups /  UK / 140 views

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

 Patient Groups /  UK / 286 views

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

 Patient Groups /  UK / 140 views

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

 Patient Groups /  UK / 242 views

Page 1 of 3