Useful information: genetics
Patient information leaflets
- Genetic Alliance UK
A national charity working to improve the lives of patients and families affected by all types of genetic conditions.
Support group websites
- Antenatal Results and Choices (ARC)
Helping parents and healthcare professionals through antenatal screening and its consequences.
- Contact a family
Contact is a charity for families with disabled children. Their vision is to bring families together to support each other, and help families to campaign, volunteer and fundraise to improve life for themselves and others.
- SWAN UK
Support for families affected by a syndrome without a name.
Support group for anyone affected by a rare chromosome disorder or an autosomal dominant single gene disorder.
- Wessex Cancer Trust
A local charity aiming to help people living with cancer by offering emotional, physical and practical support.
Cardiac disorder support
- Cardiomyopathy UK
Specialist charity for people affected by cardiomyopathy, providing support and information services for families and healthcare professionals.
Rare disorder support
- PURA Syndrome Foundation
The PURA Syndrome supports and educates patients and their families, providing a global community. The Foundation also provides access to relevant medical research studies.
- 100,000 Genomes Project
The project will sequence 100,000 genomes from around 70,000 people. Participants are NHS patients with a rare disease, plus their families, and patients with cancer.