About Us2018-10-01T11:56:49+00:00


We are the national charity working to improve the lives of patients and families affected by all types of genetic conditions. We are an alliance of over 200 patient organisations.

Our aim is to ensure that high-quality services, information and support are provided to all who need them. We actively support research and innovation across the field of genetic medicine.

Our Mission


We seek to raise awareness of genetic conditions and improve the quality of services and information available to patients and families.


We actively campaign on issues of policy and practice to influence governments, policy makers, industry and care providers such as the National Health Service.


We provide a united voice for all those affected by genetic conditions, enabling us to work together towards a common goal of making life better for patients and families at risk.

Our Team and Trustees

We have a team of staff dedicated to delivering our mission statement. The team is made up of individuals with a wide range of interests and skills, working in areas such as policy, public affairs, research and public engagement, with backgrounds both in the natural and social sciences.

We are governed by a Board of Trustees made up of representatives of our patient organisations who set the charities strategic aims and monitor the delivery of our objectives.

Meet the team

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