Last updated on November 4th, 2025 at 08:45 pm

We run a Genetic Counsellor-led Helpline for those affected by a genetic condition and their families, and support a Partnership Network of patient organisations working with those with genetic conditions.

There are between 6,000-10,000 genetic conditions.

There are 3.5 million people in the UK living with a rare condition, of which 80% are genetic.

Some genetic conditions are apparent at birth while others are diagnosed at different stages throughout childhood, and sometimes into adulthood.

We support everyone affected by a genetic condition: the individual, family members and carers, healthcare professions and people who need to know how to support someone living with a condition.

We are here to help.