About us

We aim 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.

Mission Statement:

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

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

Uniting: 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.


If your organisation works for people with genetic conditions, join us.