Information and Support

There is support available for those with, or affected by, a rare or genetic condition. Below are some websites with useful information and organisations which can provide advice and support for specific conditions or needs:

  • Genetic Alliance UK is an alliance of over 230 patient organisations supporting those affected by rare and genetic conditions. Details of their work and member organisations is provided on their website:
  • SWAN UK (Syndromes Without a Name) is the only dedicated support network in the UK available for families of children and young adults with undiagnosed genetic conditions:
  • Rare Disease UK is the national campaign for people with rare diseases and all who support them. Rare Disease UK provides a united voice for the rare disease community by capturing the experiences of patients and families and has over 2000 registered supporters. Membership is open to patients, carers, patient organisations, academics, health professionals or industry:
  • Orphanet gathers information about rare diseases and has information about rare conditions, patient groups, expert clinicians, expert centres and research projects from across Europe: