Rare Diseases

PTEN UK and Ireland Patient Group

Our purpose is to improve the lives of those affected by PTEN genetic alterations.

Huntington's Disease Association

Supporting people affected by Huntington's disease in England and Wales.

Dravet Syndrome UK


Support Education Research

CdLS Foundation UK & Ireland

CdLS Foundation UK & Ireland supporting families affected by Cornelia de Lange Syndrome.

Tuberous Sclerosis Association

Niemann-Pick UK (NPUK)

Making a positive difference to those affected by Niemann-Pick diseases

Genetic Alliance UK

"For the 1 in 17 people with a genetic, rare or undiagnosed conditions in the UK "

Gene People