Friday, May 15, 2009

National Organization for Rare Disorders (NORD)

Yesterday, the National Organization for Rare Disorders hosted a fabulous gathering to discuss how to accelerate the development of new treatments for rare disorders, such as dystonia. The Partners in Progress Rare Disease Summit, held in Washington, DC featured Tommy Thompson, former Health and Human Services Secretary and four-term Governor of Wisconsin, as the keynote speaker. David Kessler, MD, JD, former Commissioner of FDA chaired the summit that also featured presentations by: Janet Woodcock, MD who serves as the Director of the FDA's Center for Drug Evaluation and Research, Michael Astrue, JD, Commissioner of the Social Security Administration, Francis Collins, Former Director of the NIH's National Human Genome Research Inistitute and many other leaders from FDA, industry and healthcare reform.

Dr. Woodcock spoke about the importance of patient organizations being a part of a movement to stimulate the development of new treatments. The DMRF is doing this through the Cure Dystonia Initiative (CDI) and over lunch I was able to describe CDI to Dr. Kessler. During our discussion we also talked about the challenges many advocacy organizations, like the DMRF, face when launching and supporting a translational research program. We hope this discussion will help to engage NORD in supporting organizations like DMRF in our efforts.

You all should know that you are a part of a organization that is committed to achieving our goal of identifying better treatments while we work toward that day when we close our doors because we have a cure. Yesterday, was confirmation that we are on the cutting edge in this effort - and we able to do this because of the support and trust of our members, donors and the DMRF community. Thank you all!

Congratulations to NORD on a fabulous meeting and to Claire Centrella, DMRF's President, who is a member of the NORD Board of Directors.

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