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Rare Diseases

Niemann-Pick UK (NPUK)

Making a positive difference to those affected by Niemann-Pick 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

Spread Your Wings

Life with Angelman Syndrome

The Aplastic Anaemia Trust

Bringing failed bone marrow back to life

Huntington's Disease Association

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

PTEN UK and Ireland Patient Group

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

Tuberous Sclerosis Association

https://tuberous-sclerosis.org/

Unique - Rare Chromosome Disorder Support Group

Understanding Chromosome & Gene Disorders

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

Genetic Alliance UK

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

MyAware

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

AngelmanUK

Support Education Research

Gene People

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

CdLS Foundation UK & Ireland

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

PSPA

CREATING A BETTER FUTURE FOR EVERYONE AFFECTED BY PSP & CBD