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 2020
Raise £20k per year
Host family day for SDS families
Establish adult clinic
Set up database and UK Registry
Host 2020 SDS Medical Conference in Cambridge
Host Junior Doctor Training Day
Contribute towards research