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.

Black and red Run for Charity logo on white background

Run for Charity work with over 2,000 charities in the UK. They provide the biggest platform for filling places in over 750 running events and challenges in the market. 

Congenital Central Hypoventilation Syndrome (CCHS) Explained

CCHS is an extremely rare genetic condition which causes sufferers to lose their control of the most basic living function. Breathing. This is always the case when asleep but for some sufferers when awake too. It is caused by mutations in the PHOX2B gene and currently requires lifelong artificial ventilation as life support.