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EUROPEAN COUNTRIES MOVE TO TACKLE RARE DISEASESEU member states are to develop and implement plans or strategies for the treatment of rare diseases. The move was welcomed by Rare Disease UK, the national alliance of patient charities, medical professionals and industry representatives.
Alastair Kent, Chair of Rare Disease UK, said: “This is an important step forward for the estimated 3.5 million people in the UK who are affected by rare disease. We are also delighted that this initiative has received wide cross-party support. It now needs to be taken forward in all the nations of the UK.”
He added: “It is important that families affected by rare conditions are offered a strategic approach to the provision of their healthcare. We are still hearing frequently that patients are having difficulties accessing high-quality care and services. A national strategy for integrated service delivery would help to ensure that these vital services reach all the people who so desperately need them.”
Dr Peter Corry, a leading Paediatrician at St Luke’s Hospital, Bradford, said: “Diagnosing rare diseases, many of which are severe or life-threatening, is often difficult and the complex treatments required may involve several specialists. A national strategy that integrated rare disease services would enable patients and health professionals to provide and use best practice care and the health services to make best use of scarce expertise and improve outcomes for patients.”
There are over 6,000 rare conditions identified, and they affect over 3.5 million people in the UK and over 30 million people in the EU at some point in their life.
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