We are here to support UK patients and families affected by SDS. 


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.


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Find out about SDS, our organization,
our mission, our team, our medical advisory board, fundraising objectives - and how to get support


Take Action

Ready to join us? You can become a contributor to our cause, or participate yourself.


SDS UK is a Registered Charity: 1164269