Rare Disease Impact Report: Insights from patients and the medical community

General
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Report launched on the impacts of rare diseases

Thank you for helping us to gather so many patients' and families' views and experiences

Dear RDUK member,
You may remember that earlier this year we asked for your help to fill out a survey looking at the impact of rare diseases. Genetic Alliance UK and Rare Disease UK worked with Shire Pharmaceuticals to pull the survey together and we are delighted to say that the response we had was fantastic with nearly 500 patients responding!
The survey not only asked patients and their carers about the impact of rare diseases, but also clinicians, researchers, policy makers and payors.
A report looking at the findings of the survey has been published, comparing the impacts of rare diseases on those in the UK and the USA. The report is available here:Rare Disease Impact Report: Insights from patients and the medical community
This new report from Shire highlights and confirms the issues faced by patients affected by rare diseases. The inclusion and comparison of clinicians’, payors’ and patients’ experiences demonstrate the importance of working together, as a community, to tackle the issues faced by patients. It also highlights the importance of working with the international rare disease community in order to share best practices and information for all those affected.
Thank you once again for your help with this valuable piece of work.
Kind Regards,
Alastair Kent
Alastair Kent OBE
Chair RDUK

http://www.raredisease.org.uk/documents/Website%20Documents%20/rare-disease-impact-report.pdf

http://www.raredisease.org.uk/

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I read the report and happy it was commissioned. But it merely confirms what we already know. Ataxia is unknown to the general public; there is no money in research; doctors and nurses are, also, sometimes oblivious. Help is far away. There is no central information center and patients are on their own. I don't think that 30 million sufferers are so rare! N