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Early Registration Deadline on Monday for U.S. Conference on Rare Diseases and Orphan Products

Horsham, PA (PRWEB) September 13, 2013

The early registration deadline for the third annual U.S. Conference on Rare Diseases and Orphan Products is Monday, Sept. 16. Co-sponsored by the National Organization for Rare Disorders (NORD) and DIA in collaboration with the Food and Drug Administration (FDA) and EURORDIS (Rare Diseases Europe), the conference will take place from Oct. 7 to 9 at the Bethesda North Marriott Hotel & Conference Center in Bethesda, Md.

Key stakeholders in the rare disease community, including patient advocates, industry leaders, researchers, regulatory officials and investors, will benefit from interactive plenary and group sessions focusing on topics such as legislative updates, scientific advances and the investment outlook.

Panels and speakers will include:

  •     Keynote speaker Bill Corr, deputy secretary, U.S. Department of Health and Human Services
  •     The Affordable Care Act and the Rare Disease Community, Catherine Oakar, senior policy adviser, U.S. Department of Health and Human Services
  •     The Investment Environment for Orphan Drugs/Devices, David I. Scheer, president, Scheer & Company, Inc.
  •     The International Perspective on Orphan Drugs/Devices, Geoffrey McDonough, M.D., president and CEO, Swedish Orphan Biovitrum AB (Sobi)
  •     Patients and Industry: Partnership and Collaboration in Research Funding and FDA Review, Kari Luther Rosbeck, president and CEO, Tuberous Sclerosis Alliance
  •     How Payer Organizations Make Coverage Decisions for Orphan Drugs, J. Russell Teagarden, senior vice president of medical and scientific affairs, NORD
  •     The Health Care System of the Future, William Shrank, M.D., assistant clinical professor of medicine, Harvard Medical School, and associate physician of the Division of Pharmacoepidemiology and Pharmacoeconomics, Brigham and Women’s Hospital
  •     Managing Orphan Drug Recalls and Shortages, Pamela Williamson, senior vice president and global head of regulatory affairs and compliance, Genzyme, and Valerie Jensen, associate director of the Center for Drug Evaluation and Research, FDA
  •     Research Frontiers in Rare Diseases: The Next Opportunities, Anne Marie Finley, vice president of government relations and public policy, Celgene

Interact With Patient Advocates
Representatives of approximately 100 patient organizations will attend this year’s conference, providing opportunities for stakeholders to learn firsthand about patient needs and challenges and how to form partnerships to reach shared goals.

Register for the Conference Now
For more information or to register, visit the conference website. Early registration rates are available through Monday, Sept. 16. NORD and DIA have arranged for a discounted rate of $189 for a standard room at the Bethesda North Marriott Hotel & Conference Center. The rate is available until Sept. 23, or when the room block is filled. Follow instructions on the conference registration website for reserving a hotel room.

Attend the Pre-Conference FDA/EMA Orphan Product Designation and Grant Workshop

FDA and the European Medicines Agency (EMA) will co-host the FDA/EMA Orphan Product Designation and Grant Workshop on Oct. 4, at FDA’s White Oak Campus in Silver Spring, Md. The workshop will provide valuable information about the agencies’ orphan drug designation programs, the FDA Humanitarian Use Device designation program and the FDA Orphan Products Grants Program. There will be no registration fee for the workshop. For information and registration details, visit the FDA workshop website.


ABOUT NORD: NORD is a nonprofit organization established in 1983 by leaders of rare-disease patient organizations to represent all Americans affected by rare diseases. NORD provides programs of advocacy, education, research and patient/family services. We work closely with approximately 200 member organizations representing people with specific rare diseases. NORD has offices in Boston; Danbury, Conn.; and Washington, D.C. Learn more about NORD at

ABOUT DIA: DIA is a neutral, global, professional and member-driven association of nearly 18,000 professionals involved in the discovery, development and life cycle management of pharmaceuticals, biotechnology, medical devices and related health care products. Through our international educational offerings and myriad networking opportunities, DIA provides a global forum for knowledge exchange that fosters the innovation of products, technologies and services to improve health and well-being worldwide. Headquarters are in Horsham, Pa., USA, with offices in Basel, Switzerland; Tokyo, Japan; Mumbai, India; Beijing, China; Washington, D.C.; and Latin America. Visit our website at

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