Genetic Alliance UK is the largest alliance of organisations supporting people with genetic, rare and
undiagnosed conditions in the UK.

The mission of the Rare Diseases Clinical Research Network is to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing. 

The ID Band Company sells a wide range of medical ID jewellery and offers 20 per cent discount for patients with CCHS. 

Tubie kids has partnered with CCHS UK to offer discount on seat belt covers.