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Eurordis represents uncommon disorders

PostPosted: Fri Apr 20, 2012 8:48 am
by malory ... -diseases/

While browsing the Eurordis website to investigate the requirements for Eurordis membership, I found this article by Nick Sireau. It is possible to respond to the UK’s diabolical decisions regarding not funding research into rare diseases by following the link above. The more people who respond, the better.

This is an extract from his blog:
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. ... -diseases/

Re: Eurordis represents uncommon disorders

PostPosted: Sat Apr 21, 2012 4:36 pm
by smelly
Do we just add our comments to the box at the bottom o f the article does anyone know?