Genetic Alliance UK

Genetic Alliance UK is a national charity of over 200 patient organisations supporting all those affected by genetic conditions. Its aim is to improve the lives of people affected by genetic conditions by ensuring that high quality services and information are available to all who need them.

History

Founded in 1989, Genetic Alliance UK has grown to be the largest coalition of genetic and rare disease patient organisations in the UK. It was originally established as a network for groups and individuals interested in genetic disorders, but has since expanded its remit to include all rare diseases.

Activities

Genetic Alliance UK undertakes a wide range of activities to support its members and the wider rare disease community. These include:

• Advocacy: Genetic Alliance UK advocates for the rights and interests of people affected by genetic conditions at a national and European level. This includes lobbying for improved services, better access to treatments and greater recognition of the challenges faced by those living with rare diseases.

• Information and support: Genetic Alliance UK provides information and support to individuals and families affected by genetic conditions. This includes producing information resources, running support groups and providing a helpline service.

• Research: Genetic Alliance UK is involved in a number of research projects aimed at improving understanding of genetic conditions and developing new treatments. This includes collaborations with academic institutions, pharmaceutical companies and other patient organisations.

Partnerships

Genetic Alliance UK works in partnership with a wide range of organisations to achieve its aims. These include other patient organisations, healthcare professionals, researchers, policy makers and industry partners.

See also

• Rare diseases
• Genetic disorders
• Patient advocacy
• Healthcare in the UK

External links

• Genetic Alliance UK

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