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Tuesday, July 24, 2012

No specific funding for rare diseases in UK in general

halitosis researchOne of the benefits of being involved with EURORDIS and NORD, is that one has access to a great deal of information about the latest research efforts and the political arena that determines which research projects get off the ground or not. The following are excerpts of an article entitled, A disappointing consultation on the UK plan for rare diseases, posted in the EU Rare Disease blog on March 7, 2012, featured in Rare Disease Blogs, a joint EURORDIS/NORD project publishing International opinion on Rare Diseases & Orphan Drugs. It is written by Dr. Nicolas Sireau, Chairman of the AKU Society, a medical charity that works in partnership with the Royal Liverpool University Hospital to find a cure for AKU.



No specific funding for rare diseases
The first disappointment was that I couldn’t find anywhere a commitment to specific funding for rare diseases. While the second French national plan allocates €180 million towards rare diseases, there’s no mention in the UK consultation document of any UK budget for rare diseases…

Not much on research
The third disappointment was the research section, which is one of the shortest sections of the document, yet the area most in need of investment in the UK.
It starts by saying that ‘the UK is at the cutting edge of research into rare diseases’. This may be the case, but it’s definitely not because of any concerted government funding.
That’s why the following sentence is so grating: ‘Research is carried out by universities, the NHS, and other organisations. It is funded by Government.’
As anyone in the UK working in rare disease research knows, there is no funding available from the government specifically for rare diseases. Having spoken to several government funding agencies, I can tell you that rare diseases are at the bottom of their priority list. They made it clear to me that rare diseases cannot compete successfully for funding against common diseases such as cancer or heart disease.

Nick Sireau

Readers are welcome to write comments on this post here , (scroll down to the bottom to write your comments).
You can download the consultation on the UK national plan for rare diseases here.


So what strategy should we take? So strive to proactively participate in NORD and EURORDIS by uniting with projects that serve common goals, being aware of the latest developments in government policies and procedures, and never letting the UK and US governments forget that we are still around.

María

María de la Torre
Founder and Executive Director

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A EURORDIS and NORD Member Organization

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