2012 U.S. Conference on Rare Diseases and Orphan Products: Shaping the Future Now
HORSHAM, Pa., Oct. 17, 2012 /PRNewswire/ — The 2012 U.S. Conference on Rare Diseases and Orphan Products will bring together the rare disease and orphan product communities to collaborate on and advance product research, drug development and access to treatments to help the 30 million Americans suffering from rare diseases. Sponsored by DIA and the National Organization for Rare Disorders (NORD), the conference will be held Oct. 22-24 at the Capital Hilton hotel in Washington, D.C.
Among the conference’s influential speakers and moderators will be keynote speaker John J. Castellani, president and CEO of Pharmaceutical Research and Manufacturers of America, who will discuss special challenges in rare diseases, and Stephen C. Groft, director of the National Institutes of Health Office of Rare Diseases Research, who will moderate several panel discussions including one on gene therapy and genome sequencing.
Two influential journalists also will play a part in the sessions. Wall Street Journal reporter Thomas Burton will moderate a discussion about the environment surrounding investments in orphan products, and Steve Usdin, Washington editor of BioCentury and co-host of “BioCentury This Week,” will moderate panel discussions about the ethical challenges of genetic testing and internationalization of the rare disease community.
Participants and other presenters will include representatives of patient organizations and drug and medical device companies, researchers, investors, thought leaders and regulatory officials.
Other conference sessions to be featured are Well-Designed and Well-Conducted Clinical Trials; Challenges of Reimbursement for the Rare Disease Patient; Comparative Effectiveness Research and Health Technology Assessments; and Role of Academic Centers in Orphan Product Development.
Another unique component of the 2012 conference will be an inspiring panel discussion on Oct. 22 featuring patients who have a rare disease and their advocates, who will talk about how nonprofit associations for rare diseases are playing a key role in the development of orphan products.
Visit www.diahome.org to learn more about the conference and register.
ABOUT DIA: DIA is a neutral, global, professional and member-driven association of nearly 18,000 professionals involved in the discovery, development and lifecycle 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; Mumbai, India; and Beijing.
ABOUT NORD: NORD is a nonprofit organization representing U.S. patients and families affected by rare diseases. NORD was established in 1983 by leaders of rare disease patient organizations who worked together for the enactment of the Orphan Drug Act. Today, NORD provides programs and services that include advocacy, education of patients and medical professionals, support for research and patient assistance programs to help patients access lifesaving therapies.