New plan to tackle rare diseases in Wales

3 Mar 2015 11:28 AM

Wales’ first ever plan to tackle rare diseases was yesterday launched by Deputy Minister for Health Vaughan Gething.

The plan sets out the Welsh Government’s expectations of the NHS in Wales to treat rare diseases for people of all ages, wherever they live and whatever their circumstances.

A rare disease is defined as a life-threatening or chronically debilitating disease, which affects five people or less per 10,000 and 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 of diseases classed as rare in Wales 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.

The plan sets out how the Welsh Government will implement the UK Strategy for Rare Diseases. It sets out what actions health boards, NHS trusts and their partners in local government, the third sector, education and research and industry can take together to engage and co-ordinate specialised services, which may operate only at regional, national or even international level.

The five areas identified to help achieve the aims of the plan are:

• empowering those affected by rare diseases
• identifying and preventing rare diseases
• diagnosis and early intervention
• coordination of care
• the role of research.

Mr Gething said:

“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.”