Useful links

Information and links to other websites of interest

More about genetics

Genetic Alliance UK – a national charity of over 150 patient organisations supporting all those affected by genetic conditions.
The British Society for Human Genetics (BSHG) – has a section for patients which is helpful.
Genomics England – This project will sequence the personal DNA code – known as a genome – of up to 100,000 patients over the next five years.
International Rare Diseases Research Consortium – teams up researchers and organisations investing in rare diseases research in order to achieve two main objectives by the year 2020, namely to deliver 200 new therapies for rare diseases and means to diagnose most rare diseases.

Participating in research

Involve – The NIHR organisation  which supports the engagement and involvement of public and patients in research.

People in research – A searchable website which allows patients and public to find out about opportunities for involvement near them