SDS UK was formed in 2016.

Our Mission is to support UK patients and families affected by SDS by:

  • Providing forums for families, patients & medical professionals to connect

  • Promoting access to health and educational services & resources

  • Supporting the development of an adult clinic and transition from paediatric to adult care

  • Supporting research into the pathophysiology of SDS and potential treatments, in particular a dedicated UK Patient Registry

  • Fundraising to meet charity objectives


3 year plan from 2019

  • Raise £20k per year

  • Set up website

  • Host family day for SDS families

  • Establish adult clinic

  • Set up database and UK Registry

  • Host 2020 SDS Medical Conference in Cambridge

  • Contribute towards research