There is support available for patients living with a rare disease, or for family members affected by a rare condition. We have listed a number of sites where you may find useful information and organisations who are able to provide advice and support for your specific condition or needs:
Genetic Alliance UK is a membership organisation of over 230 patient organisations supporting those affected by rare and genetic conditions. If you want to find out if there is a support group in existence for a rare disease, this is a good place to start a search.
If you want to find out more information about a rare disease, then Orphanet is a good place for search or two. Orphanet gathers information about rare diseases and has information about rare conditions, patient groups, expert clinicians, expert centres and research projects from across Europe.
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