You are here: Home / News & Events / News / IMAGES FROM THE SECOND ANNUAL U.S. CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS (OCTOBER 22-24, 2012)

IMAGES FROM THE SECOND ANNUAL U.S. CONFERENCE ON RARE DISEASES AND ORPHAN PRODUCTS (OCTOBER 22-24, 2012)

NORD co-sponsored the 2nd Annual Conference on Rare Diseases and Orphan Products on Oct. 22-24 with the Drug Information Association (DIA).

The Conference on Rare Diseases and Orphan Products drew together nearly 500 patient advocates, investors, researchers and policymakers.

castellini

audience-thoughtful

PhRMA President and CEO John Castellani with Anne-Marie Finley of Celgene and Dennis Jackman of CSL Behring

Probing issues drew thoughtful attention

cff-medical-director


miriam-oday

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

patient-panel


jennings

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.

nord-ahic

investment-panel

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.

flaminia-maria

fdasia-impact

EURORDIS representatives Maria Mavris, PhD, and Flaminia Macchia

Panelists on "Impact of FDASIA on Orphan Product Development"

poster-session

audience-duke

This was the first year the conference included a poster session.

Duke University researcher Priya Kishnani, MD, and others

mohan-meeker

cobb-panel

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.

nord-display

raskin

NORD's display and literature

Julie Raskin of Congenital Hyperinsulinism International

leff

morales

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.

audience-keen

flaminia

The format encouraged audience interaction with speakers

Flaminia Macchia, Director of European Public Affairs for EURORDIS

(Risdon Photography)

 
Copyright ©2014 NORD - National Organization for Rare Disorders, Inc. All rights reserved.