Rare Disease UK – a national alliance for people with rare diseases and all who support them – are investigating how public and major funding bodies in the UK support research into rare diseases. They have produced a short online survey to gather the views of as many people as possible to inform their report which will help funding bodies ensure that they are effectively supporting rare disease research. Whether you’re a patient or family member affected by a rare disease, work for a patient organisation or research charity, a researcher or clincian, or work in the pharmaceutical industry, they would love to hear your views. You can access the survey here, it takes 5 minutes and the deadline is 30 September.
What’s this survey about?
Major funders such as National Institute of Health Research (NIHR), the Medical Research Council (MRC), the Wellcome Trust and Cancer Research UK support research into rare diseases. Rare Disease UK want to produce a report assessing the way rare disease research is currently funded and supported and to develop a series of practical recommendations to help public/major funding bodies ensure that they are effectively supporting rare disease research. The survey will inform this.
They are looking for the views of the broad spectrum of people with an interest in rare diseases including individual patients and family members, representatives of patient organisations, researchers, clinicians, health professionals and members of the pharmaceutical industry.
A rare disease is defined as any condition that affects less than 5 in 10,000 people, but combined they affect a lot of people – 1 in 17 of us will be affected at some point in our lives. Many AMRC member charities fund research into rare diseases.
The UK has signed up to a Council of the European Union communication on rare diseases. This committed the UK to developing a national strategy for rare diseases by the end of 2013.
In 2008, people with rare diseases and charities and organisations representing them teamed up to create Rare Disease UK – a national alliance which set out to campaign for the health departments across the UK to develop this strategy. AMRC are part of Rare Disease UK. They established working groups of experts and produced a very comprehensive report called Improving Lives, Optimising Resources: A Vision for the UK Rare Disease Strategy recommending what a strategy should look like if it is going to be effective, and accurately reflect the needs of the rare disease community.
The Department of Health published their proposals for a UK plan for rare diseases back in February aimed at improving the services, treatment and support that people with rare disease receive. AMRC repsonded, highlighting the importance of research for new treatments alongside improvement in care services.