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- Info
Images from the Rare Diseases/Orphan Products Summit
NORD co-sponsored the 1st Annual Rare Diseases/Orphan Products Summit on Oct. 11-13, under the auspices of the Drug Information Association (DIA).
Scenes from the U.S. Conference on Rare Diseases and Orphan Products October 11 - 13 at the Omni Shoreham Hotel in Washington DC. This conference was sponsored by NORD and DIA (the Drug Information Association) with collaboration from EURORDIS (the European Rare Disease Organization), the National Institutes of Health (NIH), the Food and Drug Administration (FDA) and Duke University School of Medicine.
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NIH Director Francis Collins, MD, PhD
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Participants of the conference included patient, government and industry representatives
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Keynote Address by Fred Hassan, MBA Partner, Warburg Pincus and Chairman of the Board, Bausch + Lomb (photo credit: DIA-Drug Information Association)
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Social Security Commissioner Michael Astrue made a special announcement about 13 new compassionate allowances (photo credit: DIA-Drug Information Association)
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Yann Le Cam and Sharon Ashton-Sirot of EURORDIS, with Marlene Haffner, formerly Director of FDA Office of Orphan Products Development
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NORD President and CEO Peter L. Saltonstall
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Gayatri Rao, MD, Acting Director of FDA Office of Orphan Products Development and Frank Sasinowski, chair of the NORD board of directors
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NORD's literature table
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The conference featured three tracks (for patients, industry, and researchers)...
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... along with general sessions of interest to all
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Jeffrey Shuren, MD, JD, Director, FDA Center for Devices and Radiological Health
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It was Dr. Rao's first week on the job at FDA OOPD
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Frank Sasinowski presented a new report from NORD on FDA orphan drug approvals since 1983
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Jack Johnson of the Fabry community and other patient advocates played a key role
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Dave Caponera from the industry track discusses a point with Stephen C. Groft, PharmD, Director of the NIH Office of Rare Diseases Research. Former NORD board chair Carolyn Asbury, PhD, is in the background
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Panel on Developing a Strong Patient Advocacy Organization
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Larry Bauer, RN, MA, Senior Regulatory Project Manager, DFA, CDER (left), Anne Pariser, MD, Associate Director for Rare Diseases, FDA CDER, and Dan Brum, PharmD, MBA, BCPS, RAC, Senior Regulatory Project Manager, FDA, CDER
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Mark McClellan, MD, PhD, Director, Engelberg Center for Health Care Reform, The Brookings Institution, chats with patient organization leaders after his presentation
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Janet Woodcock, MD - Director, Center for Drug Evaluation and Research, FDA
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FDA Track Panel on Biomarkers and Surrogates
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