An online support service providing information on rare genetic conditions for those who need it.

Info_rare is a free online support service for anyone requiring clear, reliable information on genetic conditions. The service benefits from medical and scientific consultation with two doctors who are specialists in medical genetics, and answer queries via e-mail from people who have discovered they have a rare genetic condition, or want information on research projects that are underway.

What questions can be answered?

  • Info_rare provides information on centres for rare genetic conditions, diagnostic centres, and referral centres for registering patients.
  • The latest news on trials in progress on genetic conditions and clinical testing by the Foundation.
  • Contact details of associations for patients with a rare genetic condition.

The response time of the geneticists is approximately one month.

This free service is designed to provide information and is not a genetic consultation, therefore a specific appointment with a specialist will still be necessary.

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