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Transform the future of healthcare

Genomic medicine is already helping more people receive answers about their health conditions through better diagnosis, treatment, and support. By volunteering to take part in research, you'll be making a difference to NHS patients and the future of genomic medicine.

Nurse using stethoscope to check heartbeat of black female patient

Useful participant forms

If you'd like to find out more about the National Genomic Research Library (NGRL) or remove your data or the data of your child as their legal guardian from the NGRL or from receiving additional findings, please find and use the corresponding form below.

FAQs about taking part

Visit our Understanding Genomics section for answers to many questions that might help you to decide whether to donate your data.

Find support

Each of these charities or support organisations can provide information, support or services for families affected by genetic and health conditions.

  • Genetic Alliance UK is the national charity working to improve the lives of patients and families affected by all types of genetic conditions.

  • Gene People UK is a genetic conditions support network with information for affected families.

  • Macmillan Cancer Support helps those affected by cancer to find resources, advice, and support to live as fully as they can.

  • Contact A Family is a national charity for families with disabled children.

  • EURODIS, Rare Diseases Europe, is a patient-driven alliance of patient organisations representing 695 rare disease patient organisations in 63 countries.

  • Rare Disease UK is the national alliance for people with rare diseases and all who support them.

  • SWAN, Syndromes Without A Name UK offers support and information to parents of children with undiagnosed genetic conditions.

  • Unique, Understanding chromosome disorders aim to inform, support and alleviate the isolation of anyone affected by a rare chromosome disorder and to raise public awareness.

  • Health Talk provides free, reliable information about health issues, by sharing people’s real-life experiences.

  • MyGene2 allows families to search for and contact other families who have the same condition or mutations in the same gene in order to share information and offer support.

  • RareConnect is a safe, easy to use platform where rare disease patients, families and patient organizations can develop online communities.

  • For support with a specific rare disease, you can search for patient organisations and charities on the Rare Disease UK website.

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