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NORD and DIA to Host Conference on Rare Diseases and Orphan Products

WASHINGTON, Sept. 14, 2011 /PRNewswire-USNewswire/ -- The National Organization for Rare Disorders (NORD) and the Drug Information Association (DIA) will host the U.S. Conference on Rare Diseases and Orphan Products in Washington, D.C. October 11-13.  Everyone with an interest in rare diseases or orphan products is invited.


"This conference will be truly unique in that it will draw together all the stakeholders from government, industry, academia and patient organizations," said Peter L. Saltonstall, president and CEO of NORD.  "Most of the nearly 7,000 rare diseases don't have FDA-approved treatments.  The purpose of this conference is to bring everyone together—government, industry, medical researchers, investors and patients—to examine the challenges and opportunities."

NORD is a nonprofit organization representing all Americans affected by rare diseases.  DIA is a nonprofit, global professional association of members involved in pharmaceutical and medical device discovery, development, and management.

Senior staff from the National Institutes of Health (NIH) and Food and Drug Administration (FDA) will speak at the conference, along with thought leaders from the pharmaceutical industry, medical researchers, and the investment community.  Speakers will include:

  • NIH Director Francis Collins, MD, PhD
  • Social Security Commissioner Michael Astrue
  • Christopher P. Austin, MD, PhD, Scientific Director, NIH Center for Translational Therapeutics
  • Janet Woodcock, MD, Director of FDA's Center for Drug Evaluation and Research
  • John K. Jenkins, MD, Director, Office of New Drugs, FDA Center for Drug Evaluation and Research
  • Suzanne L. Bruhn, PhD, Senior VP, Shire Human Genetic Therapies
  • Marc Dunoyer, Global Head, Rare Diseases, GlaxoSmithKline
  • Lynne Fahey McGrath, MPH, PhD, Vice President, North American Head Drug Regulatory Affairs, Novartis Oncology Corporation
  • Dennis Jackman, Senior VP, Public Affairs, CSL Behring
  • Margaret Anderson, Executive Director, FasterCures
  • Jonathan S. Leff, AB, MBA, Managing Director, Warburg Pincus
  • Jeff Allen, PhD, Executive Director, Friends of Cancer Research

While the conference is co-hosted by NORD and DIA, collaborators also include Duke University School of Medicine, the European Rare Diseases Organization (EURORDIS), FDA and NIH.  Topics will include:

  • How federal policies affect patients with rare diseases
  • NIH grant and FDA approval requirements
  • How health care reform will impact rare disease patients
  • Venture philanthropy
  • Clinical trial designs and case examples
  • The economics of investing in orphan products

Information about the conference is available on the NORD website ( and on a special site for online registration hosted by DIA: (

The conference will take place at the Omni Shoreham Hotel in Washington, D.C.   For additional information, contact NORD or DIA.

SOURCE National Organization for Rare Disorder (NORD)
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