Rare Disease UK and the Genetic Interest Group are organising activities around International Rare Disease Day on 28th February 2009, including three parliamentary receptions to raise the profile of rare diseases and to campaign for the development of a National Plan. A national plan for rare diseases would improve the care, support and treatment for the over 3.5 million people currently living in the UK with a rare condition, according to the two organisations.
The first event was held on 25th February at the House of Commons and over 200 patients, clinicians and industry representatives as well as over 20 MPs and Lords filled the room. As Ann Milton MP noted in her speech, it is not often that so many various stakeholders gather in a room over a Wednesday lunchtime! It was a true measure of the support and commitment from so many that ensured the room was full, she said.
Rare Disease UK is a cross-sector campaign organisation planning to work with the NHS in the four home nations to create plans and strategies for systematic delivery of high quality integrated care and support to patients and families. This will help to stimulate research and to promote effective horizon scanning so that new possibilities for intervention can be quickly incorporated into clinical practice. With over 6000 rare conditions identified it is vital that strategic measures are taken to deal with this growing issue, according to the Genetic Interest Group (GIG).
Many families with a rare condition struggle to get a diagnosis and when they do it is often not clear what the next steps should be, leaving them without information and adequate support. Rare Disease UK and GIG feel that all families have the right to care and support that reflects current scientific understanding and best clinical practice and that the most appropriate way to do this for rare conditions is to create a national, coordinated plan. It will also enable the NHS to make the best use of its limited resources, say the organisations.
Researchers will be able to use their skills in addressing unmet health needs arising from rare conditions and industry must also play its part within a clear framework that encourages genuine innovation and speedy transfer from lab to into clinical practice. National Plans are already being implemented in other European Countries such as France, Bulgaria and Portugal.
It is important to build on the current areas of good practice that are evident and ensure that these pockets of best practice can be extended to all those living with rare conditions in the UK, stress GIG and Rare Disease UK. In the coming months Rare Disease UK will be working with all stakeholders in the development of a national plan that can support the NHS in the healthcare it provides.
Rare Disease UK membership is open to anyone with an interest in this area and is free. To sign up please go to our website.