Wednesday, January 20, 2010

Rare Disease Day Feb 28, 2010

By Denis Costello January 20 at 5:09am

Thanks for being part of the movement to raise awareness for those living with rare disease worldwide.

The 2009 Facebook group is on the move and we have migrated to a Facebook page which allows wider accessibility. So we would encourage to to become a fan of the Rare Disease Day 2010 page and spread the word: Join in the discussion and share your events. In the meantime this group will stay in place.

Feb 28 2010 promises to build on the successes of the two previous years of Rare Disease Day.

Rare Diseases as a public health priority is a founding concept of the rare disease patient movement. It will be the over arching theme of every Rare Disease Day Campaign. Each year though we adopt a different focus. In 2010 the communication focus is on "Building bridges between patients and researchers". Therefore the main messages this year will be:
- Rare Disease Research is an important area of research
- Rare Disease Research needs to be better funded
- Patients and Researchers win by working together

With this in mind EURORDIS (Rare Disease Europe) will publish the results of a survey of several hundred patient organisations evaluating the participation of patients in research which shows that where rare disease research is most active there is inevitably a motivated patient stakeholder involvement. We will keep you up to date on this survey closer the time.

In the US, NORD (National Organization for Rare Disorders) will launch a Rare Disease Physician database.

In the meantime please get involved and stay in touch with Rare Disease Day activities worldwide through or via the US site

Thanks again for you support and look forward to seeing you on the new Facebook page...

Thanks for your support.

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