Internet links for information about genetic disorders and care groups

Links to Academic and Government genetic websites

Links to Ethics and Policy Debate genetic websites

Links to the Media and Public understanding of science

Links to Human Genetics websites

Other Genetics Links

Academic and Government


Ethics & Policy Debate

Media and the Public Understanding of Science

Human Genetics

Other genetics

  • Clincal Trials - A website that has been supported by us that offers advice from patients with experience of clinical trials to those who are looking to get involved.
  • Health on the Net - Medical information you can trust
  • Haemophilia Care - an information resource and advice for the haemophilia community.
  • Patient information Forum - better communication, better health
  • Batten Disease Resource - NCL Resource - A gateway for Batten Disease
  • Shooting Star Children's Hospice - Shooting Star offers a range of care services for children and young people with life-limiting conditions and their families, in the community and at Shooting Star House, the purpose-built facility based in Hampton, Middlesex.
  • RareShare - a website dedicated which is building communities online for rare conditions
  • Endobible: This website is designed for health professionals although the information provided on the site is also useful for patients. It provides a useful resource for those who treat and live with genetic conditions which affect hormones.
  • Medlaw: This website offers useful legal advice on health issues. The information is meant to inform patients and act as starting point so that patients can pursue legal paths if they feel that their level of care isn't as it should be. It is worth noting that it is a guidance document only and shouldn't be used instead of legal representation.