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Rare Diseases

Rare Diseases Implementation Group

A rare disease is a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000.

There are between 5,000 and 8,000 rare diseases and, while each one affects relatively few people, together they affect the lives of approximately 150,000 people in Wales. 

It is estimated some 350 diseases account for 80 per cent of cases, but it is also estimated that more than 200 new diseases are identified each year. 

Our role as the Rare Diseases Implementation Group is to oversee the national plan and support health boards to deliver their local plans. 

Our members include representatives from all the health boards and trusts, third sector organisations, primary, secondary and specialist care, Welsh Government, and NHS managers. 

We review progress against the implementation plan at least once a year, ensuring a focus on working across traditional boundaries to deliver improvements in the care for people with rare diseases.

This page is under construction, please check back soon for more information.