Last updated on November 4th, 2025 at 08:43 pm
Gene People, previously known as Genetic Disorders UK, is a registered charity with a vision to improve the lives of individuals and families affected by genetic conditions.
While individual genetic conditions are rare, it is thought that there are currently more than 6,000 diagnosed conditions and new conditions are being identified every day. There are 3.5 million adults and children living in the UK with a rare condition. Approximately 80% of these are genetic. This means tens of thousands of babies, children and adults are newly diagnosed each year.
We are an anti-racist organisation and have published our statement about our position.
Governance
- Safeguarding Adults Policy
- Equality Diversity and Inclusion Policy
- Environmental Policy
- Vulnerable Persons Policy
- Promoting your work to Gene People’s community
Gene People are committed to ensuring our services meet the needs of the genetic conditions community and demonstrating our impact. The University of Exeter conducted a service evaluation of our helpline, Genetic Counsellor-led Helpline Service Based in the Voluntary Sector – A Service Evaluation, and the results were presented as a poster at the Association of Genetic Nurses and Counsellors (AGNC) Conference 2021.
