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New plan to tackle rare diseases in Wales

Wales’ first ever plan to tackle rare diseases is launched today.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. Credit: Angelika Warmuth/DPA/PAImages

It sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000. They can range from life-limiting illnesses to manageable conditions, which do not affect daily living. There are around 150,000 people affected by such diseases in Wales.

Examples include Sickle Cell, which is a disease arising out of genetic problems, and Spina Bifida - a disease arising out of deficiencies or exposures to substances during pregnancy.

"This is the first time Wales has developed a plan to improve the experiences of people living with rare diseases and it brings together a number of recommendations designed to improve coordination of care and lead to better outcomes for people.

To this end, we are keen to see real partnership across services, agencies, and above all between individuals living with rare diseases, their carers, patient organisations and the NHS.

Patients with these conditions can suffer greatly and we are determined to provide the best care we can for them. I expect this plan to make a real difference."

– Vaughan Gething, Deputy Health Minister