Menu

Rare Diseases

Dravet Syndrome UK

http://www.dravet.org.uk

The Pituitary Foundation

Empowering everyone in the pituitary community, every step of the way.

Stickler Syndrome UK

Huntington's Disease Association

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

Spread Your Wings

Life with Angelman Syndrome

The Aplastic Anaemia Trust

Bringing failed bone marrow back to life

Unique - Rare Chromosome Disorder Support Group

Understanding Chromosome & Gene Disorders

Gene People

https://genepeople.org.uk/fundraise/

CdLS Foundation UK & Ireland

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

PTEN UK and Ireland Patient Group

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

Genetic Alliance UK

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

Cure EB

accelerating research to end painful skin

MyAware

We are here to provide expert support and advice for people affected by myasthenia.

Tuberous Sclerosis Association

https://tuberous-sclerosis.org/

Ichthyosis Support Group

Supporting those with ichthyosis—together we can change lives.

Shwachman Diamond Syndrome

We are here to support UK patients and families affected by SDS. There are approximately 100 known patients in the UK and we estimate there are 1,500-2,000 patients in US and Europe

AngelmanUK

Support Education Research

PSPA

CREATING A BETTER FUTURE FOR EVERYONE AFFECTED BY PSP & CBD

Niemann-Pick UK (NPUK)

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