Finding support for rare disease

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.
  • If you have an undiagnosed condition without a specific support group, then you may want to have a look at Finally, if campaigning to improve the lives of patients is your thing, then Rare Disease UK has over 2,000 registered supporters campaigning to improve the lives of patients and families affected by rare conditions. You can join Rare Disease UK if you are a patient, carer, patient organisation, academic, health professional or representing industry.