WASHINGTON, Aug. 20, 2015 /PRNewswire/ -- The National Organization for Rare Disorders (NORD) has announced the full agenda for its 2015 Rare Diseases & Orphan Products Breakthrough Summit, the largest multi-stakeholder event dedicated to rare diseases and the only rare disease conference co-sponsored by the Food and Drug Administration (FDA), to be held October 21-22 at the Crystal Gateway Marriott in Arlington, Virginia.
More than 500 people from around the world are expected to attend and will learn from some of the most powerful and inspiring voices in rare diseases, including Stephen Ostroff, M.D., Acting Commissioner, FDA, who will be giving his first address to the rare disease community; Janet Woodcock, M.D., Director, Center for Drug Evaluation and Research, FDA; Christopher Austin, M.D., Director, National Center for Advancing Translational Sciences, National Institutes of Health (NIH); and Jono Lancaster, a patient advocate who has inspired patients and medical communities around the world with his message of courage, confidence and hope.
"Our goal for NORD's Breakthrough Summit is to bring together the entire rare disease community in one venue to create new opportunities for discovery, learning and collaboration to advance treatments for patients," said Peter L. Saltonstall, President and CEO, NORD.
"This year's Summit is especially important because we will feature more patient representatives than ever before and new senior leaders from the FDA who are committed to advancing orphan product development," Saltonstall added.
Program features include breakthrough conversations in:
- Optimizing clinical trial success and patient engagement from start to finish
- Patient-centered outcomes research (PCOR) and practical methods to incorporate the patient voice into research and development
- FDA presentations on current topics in rare diseases, including expanded access
- Physician education to facilitate early diagnosis and treatment, featuring perspectives from the American Academic of Pediatrics and Genetics in Primary Care Institute
- Precision and personalized medicine and what it means for rare diseases
- Rare cancer treatment challenges
- The legislative path ahead on national and state levels
- Marketing and communications strategies for patient organizations, featuring proven techniques to increase awareness and fundraising
- Fueling progress and access with specialty pharmacies, hub and distribution strategies
Sponsors of the two-day conference include: Accredo, Alexion, AmerisourceBergen, Cardinal Health, Cote Orphan Consulting, Dohmen, Genzyme, Horizon Pharma, Insmed, Omnicare, The Patient Experience Project, Pfizer, Rho, Target Health, UBC: an Express Scripts Company, and Vertex.
For more information or to view the complete agenda and speaker list, visit www.nordsummit.org. The event is hosted by NORD and powered by CBI.
About the National Organization for Rare Disorders (NORD)®
Established in 1983, the National Organization for Rare Disorders (NORD)® is the primary nonprofit organization representing all patients and families affected by rare diseases in the U.S. NORD is committed to the identification, treatment and cure of all 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people. NORD provides programs of advocacy, education, research, and patient and family services to improve the lives of all people living with rare diseases. NORD represents more than 230 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient community. Join NORD at www.rarediseases.org/ and on Twitter at @RareDiseases.
CBI, a division of UBM Life Sciences, is the leading provider of market-driven, unbiased conferences for the pharmaceutical, biotechnology, medical device and healthcare industries. CBI offers specialized information presented in interactive formats by thought leaders and regulators. For more information, please visit www.cbinet.com and follow CBI on Twitter at @CBI_Conferences.
For National Organization for Rare Disorders (NORD): Jennifer Huron, Email, 203.304.7258
For CBI: Lauren Donoghue, Email , 339.298.2262
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