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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.



NIH Director Francis Collins, MD, PhD

Participants of the conference included patient, government and industry representatives



Keynote Address by Fred Hassan, MBA Partner, Warburg Pincus and Chairman of the Board, Bausch + Lomb (photo credit: DIA-Drug Information Association)

Social Security Commissioner Michael Astrue made a special announcement about 13 new compassionate allowances (photo credit: DIA-Drug Information Association)



Yann Le Cam and Sharon Ashton-Sirot of EURORDIS, with Marlene Haffner, formerly Director of FDA Office of Orphan Products Development

NORD President and CEO Peter L. Saltonstall



Gayatri Rao, MD, Acting Director of FDA Office of Orphan Products Development and Frank Sasinowski, chair of the NORD board of directors

NORD's literature table



The conference featured three tracks (for patients, industry, and researchers)...

... along with general sessions of interest to all



Jeffrey Shuren, MD, JD, Director, FDA Center for Devices and Radiological Health

It was Dr. Rao's first week on the job at FDA OOPD



Frank Sasinowski presented a new report from NORD on FDA orphan drug approvals since 1983

Jack Johnson of the Fabry community and other patient advocates played a key role



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

Panel on Developing a Strong Patient Advocacy Organization



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

Mark McClellan, MD, PhD, Director, Engelberg Center for Health Care Reform, The Brookings Institution, chats with patient organization leaders after his presentation



Janet Woodcock, MD - Director, Center for Drug Evaluation and Research, FDA

FDA Track Panel on Biomarkers and Surrogates

Read more about the meeting

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