IMAGES FROM THE SECOND ANNUAL U.S. CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS (OCTOBER 22-24, 2012)
The Conference on Rare Diseases and Orphan Products drew together nearly 500 patient advocates, investors, researchers and policymakers.
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PhRMA President and CEO John Castellani with Anne-Marie Finley of Celgene and Dennis Jackman of CSL Behring |
Probing issues drew thoughtful attention |
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Cystic Fibrosis Foundation Executive Vice President for Medical Affairs Preston W. Campbell III, MD |
Miriam O'Day of the Alpha-1 Foundation, poses a question |
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Patient advocates spoke in a special media session: (from left): Mary Dunkle, NORD; Christy Greeley, Cystinosis Research Network; Ron Bartek, Friedreich's Ataxia Research Alliance; Jeff Wuchick, Alternating Hemiplegia of Childhood Foundation; Mirta Avila Santos and Sandy McElgunn, American Behcet's Disease Association; and Megan O'Boyle, Phelan-McDermid Syndrome Foundation |
Chris Jennings, Washington health policy analyst and President Clinton's chief health policy adviser, spoke on sequestration and the need for the rare disease community to clearly and proactively state its case. |
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Mary Cobb of NORD with Jeff Wuchich, Alternating Hemiplegia of Childhood Foundation; and Allie Freitas, Tai Spargo and Diane Dorman of NORD. |
A panel focusing on the current investment climate: Ritu Baral, Principal, Senior Biotechnology Analyst, Canaccord Genuity at podium and (from left) Fritz Bittenbender, VP of Alliance Development and State Goverment Relations, BIO; David Scheer, Board Chair, Aegerion and President, Scheer & Company Inc.; and moderator Thomas Burton of the Wall Street Journal. |
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EURORDIS representatives Maria Mavris, PhD, and Flaminia Macchia |
Panelists on "Impact of FDASIA on Orphan Product Development" |
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This was the first year the conference included a poster session. |
Duke University researcher Priya Kishnani, MD, and others |
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Charles Mohan Jr. of the United Mitochondrial Disease Foundation, with Cole Werble, Founding Member, Prevision Policy, and David Meeker, MD, President and CEO, Genzyme |
Panel on new relationship between patient community and industry: David Caponera of Aegerion Pharmaceuticals at the podium with (from left): Mary Cobb of NORD; Ronald Bartek, Friedreich's Ataxia Research Alliance; John Walsh, Alpha-1 Foundation; and Geraldine Carroll of Allergan. |
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NORD's display and literature |
Julie Raskin of Congenital Hyperinsulinism International |
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Paul Perreault, CSL Behring President, spoke on internationalization of the rare disease community. |
Jose Morales at the podium, Partner, Accenture Inc. and board member, Cystinosis Research Network, with (from left) Steve Usdin, Washington editor, BioCentury and Co-host BioCentury This Week; Paul Perreault, President, CSL Behring; and Gail Javitt, JD, counsel, Sidley-Austin LLP. |
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The format encouraged audience interaction with speakers |
Flaminia Macchia, Director of European Public Affairs for EURORDIS |
(Risdon Photography)























