Call to develop national plan for treatment of rare diseases

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RARE DISEASE UK CALLS FOR NATIONAL TREATMENT PLAN

Rare Disease UK has called on the Department of Health to move forward with EU proposals to develop a national plan for the treatment of rare diseases. The AKU Society is a member of Rare Disease UK, a coalition of patient charities, medical professionals and industry representatives, which was formally launched on 25 February, Rare Disease Day 2009, at the House of Commons.

There are more than 6,000 rare conditions, affecting over 3.5 million people in the UK and over 30 million people in the EU at some point in their life. A European survey of patients with rare diseases found that 40% of respondents received an incorrect diagnosis and 25% waited between five and 30 years for a correct diagnosis.

Alastair Kent, Chair of Rare Disease UK, said: “It is a national disgrace that the NHS does not have a co-ordinated plan to treat the many thousands of people who are every year affected by rare diseases. Currently patients, families and individuals affected by rare diseases are denied their right to high-quality care and support, due to a lack of co-ordination and information provision to both health professionals and patients. Finding expert help is too often a matter of chance rather than planning by the NHS. A national plan would help to bring together expertise and skill to ensure that patients with rare conditions are not denied high-quality care.”

He added: “The paradox of rare diseases is that they collectively affect over 3.5 million people in the UK but that all too often patients go undiagnosed and misdiagnosed with appalling consequences. Ministers can do more and must do more to make the NHS fit for the purpose of treating rare conditions.”

Dr Peter Corry, a leading Paediatrician at Bradford Royal Infirmary, said: “Rare diseases can be life-threatening and chronically debilitating with a high level of complexity involved in the treatment. Robust patient pathways must be implemented to ensure expedient referral, diagnosis and treatment.”