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U.S. Conference on Rare Diseases and Orphan Products to Focus on “The New Era in Health Care”

Experts from government, industry, patient advocacy groups and investment community to speak about current trends and future directions

Experts from government, industry, patient advocacy groups and investment community to speak about current trends and future directions

Cystic Fibrosis Foundation Medical Director Preston Campbell, MD, speaking at the 2012 U.S. Conference on Rare Diseases and Orphan Products.

WASHINGTON DC, July 19, 2013-----Patient advocates, industry leaders, medical researchers, government officials, and investors will join together in Bethesda, MD, on Oct. 7 – 9 for the 3rd annual U.S. Conference on Rare Diseases and Orphan Products.

Sponsored by NORD (the National Organization for Rare Disorders) and DIA (the Drug Information Association), this major event brings together all stakeholders in the rare disease community to address shared goals, concerns, challenges and opportunities.

This year, the conference will focus specifically on today’s changing healthcare environment, addressing questions such as:  What effect will the implementation of the Affordable Care Act have on rare disease patients?  What is the investment outlook for orphan product development?  And what will our healthcare system look like in the future?

“With the implementation of the Affordable Care Act and FDA Safety and Innovation Act, these are important times for the rare disease community,” said NORD President and CEO Peter L. Saltonstall.  “This conference provides an opportunity to share our various perspectives and collaborate in ways that are absolutely essential for the millions of Americans living with rare diseases.”

The conference, which is hosted in collaboration with the U.S. Food and Drug Administration (FDA) and EURORDIS (Rare Diseases Europe), will include keynote, plenary and smaller group sessions.  Plenary sessions will open a dialogue on topics of shared interest among medical researchers, industry thought leaders, patient organizations, government officials and investors.

Small group sessions will be organized around four central themes:  Research and Regulation, Access and Reimbursement, the Role of the Patient in the Research and Regulatory Process, and Implementation of the Affordable Care Act.

Since 2013 marks the 30th anniversary of NORD and the Orphan Drug Act, which provided federal financial incentives that have made it possible for companies to develop treatments for people with rare diseases, discussion will also focus on how to accelerate the pace of progress while still ensuring safe, effective treatments for patients.

“The conference will have particular timeliness during this 30th anniversary year of the Orphan Drug Act and of NORD,” said Susan Cantrell, Director, DIA North America. “With DIA’s well-established reputation for bringing together thought leaders to promote collaborative progress, and NORD’s 30th years of representation of the rare disease patient community, we anticipate a stellar event.”

The conference will take place at the Bethesda North Marriott Hotel and Conference Center in Bethesda, MD.  For information about registration, exhibiting, and special rates for patients and patient organizations, visit the conference website.

 
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