NORD Partners in Progress Rare Disease Summit – Update


partnersprogressNORD hosted a rare disease summit in Washington DC with the goal of setting a policy agenda to help create a more responsive environment for patients with rare diseases.  Congress is currently debating health care reform and new leadership is being named at the FDA, NIH and other health agencies which provides an opportunity to put our community initiatives in the hands of new leaders focused on healthcare reform, with access, affordability and quality at the top of the discussion.

National thought leaders on these topics gathered together to share their ideas on the strategies and programs that must be put in place to best represent the needs of the nearly 30 million Americans with rare disease. It is essential that the community come together to create an agenda that represents the needs of these patients and families and to ensure that this community is not left behind as our nation moves forward with health care reform.

What I found very compelling was comments at the end of the opening panel discussion by Janet Woodcock, M.D., Director, Center for Drug evaluation and Research FDA and Francis Collins, M.D., Ph.D. former Director National Human Genome Research Institute, NIH.  They both agreed that there is a need to look horizontally across rare diseases as a whole, to find commonalities across these diseases focusing on finding common pathways, common symptoms, common disorders that will ultimately create a larger group of individuals necessary to move drug development and clinical trials forward. They also discussed how important rare diseases are as it relates to helping better understand some of the more common diseases.

My assessment is that there is a new sense of team being established – and although this will take time, it’s nice to see both government, private sector and advocacy working together to move these initiatives forward.  Let’s hope this really happens.

Nicole Boice
Founder, Global Genes Project

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