<![CDATA[Denis Costello · Storify]]>http://storify.com/rarecareNodeJS RSS ModuleTue, 21 May 2013 22:44:37 GMT<![CDATA[Rare Disease Funding Models]]>

How can patient groups and researchers involved in searching for cures for rare disease attract the attention of funders

Storified by Denis Costello · Thu, Oct 27 2011 00:48:48

July 22 2011: Nick Sireau makes a blog post sharing his experience of fundraising and makes suggestions about how to improve things

The system’s broken… and here’s how to fix it « Rare Disease Blogs.The system’s broken… and here’s how to fix it « Rare Disease Blogs.
Yesterday, I was not happy. I’d been talking a major funder, trying to find out more about whether we could apply for funding for our fast moving scientific research and upcoming clinical trials for Alkaptonuria (AKU), the rare genetic disease affecting my two sons. The funder was very helpful in explaining the different funding schemes [...]

Some minutes later the first tweet by @rarediseaseblog informs its followers of Nick's blog post

Who is Dr. Nick Sireau?
What's up doc? · EURORDIS - Rare Diseases Europe
Photo: Dr. Nick Sireau (left) at EURORDIS Membership Meeting earlier this year (Amsterdam, May 2011)
Ashoka Fellow Nick Sireau · UKAshoka
Video: Dr. Nick Sireau explains the mission of the AKU Society
Nick Sireau (nicksireau) on Twitter
Nick Sireau (nicksireau) is on Twitter. Sign up for Twitter to follow Nick Sireau (nicksireau) and get their latest updates.

July 22, 10am CET @RareDiseaseDay - retweets to its almost 2000 followers

 Another retweet (the 5th today, thanks @gaobar) - the story continue to gain momentum

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