CHAMP1 UK

CHAMP1 UK is a registered charity dedicated to supporting individuals and families affected by CHAMP1 disorders, an ultra-rare genetic neurodevelopmental condition.
Their work focuses on three main pillars:

  • Family Support: They connect families across the UK to reduce isolation, providing a community for emotional support, advice, and information.
  • Research Funding: They raise funds to sponsor vital scientific research into the causes of the disorder, with the long-term goal of finding effective treatments or a cure.
  • Awareness: They advocate for the community by raising awareness of the condition among medical professionals and the general public to improve diagnosis and care standards.

Category

  • Charities and not-for-profit

Functions

  • Advocacy and policy influencing
  • Registry development
  • Research and development

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