Key Stakeholders in Rare Disease Community to Discuss the New Era in Health Care
Patient advocates, industry leaders, researchers, regulatory officials, investors and thought leaders dedicated to advancing the development of and access to therapies for rare diseases will come together for the third annual U.S. Conference on Rare Diseases and Orphan Products, held in Bethesda, Oct. 7–9. The conference is hosted by DIA and the National Organization for Rare Disorders
The Affordable Care Act and the U.S. Food and Drug Administration (FDA) Safety and Innovation Act give new urgency to the topics, and discussions will address questions such as: What is the impact of new regulatory statutes on the rare disease community? What is the investment outlook for orphan product development? What will our health care system look like in the coming months and years?
“These are crucial times for the rare disease community, as regulation is shaping the future of drug development and access,” said Peter L. Saltonstall, NORD president and CEO. “This conference provides an unparalleled opportunity to share expert insight and collaborate in ways that are vital for the nearly 30 million Americans living with rare diseases, and many others worldwide.”
The conference, hosted in collaboration with FDA and EURORDIS (Rare Diseases Europe), will include keynote, plenary, and group sessions organized by four central themes: research and regulation; access and reimbursement; the role of the patient in research and regulatory processes; and implementation of the Affordable Care Act.
This year 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.
“With DIA’s established reputation for bringing together thought leaders to promote progress, and NORD’s 30 years as the collaborative voice of the rare disease community, we anticipate a unique dialogue among stakeholders to accelerate the pace of progress while ensuring safe and effective treatments for patients,” said Susan Cantrell, director of DIA North America.
The conference will be held at the Bethesda North Marriott Hotel & Conference Center. For information about registration, exhibiting, and special rates for patients and patient organizations, visit the conference website
ABOUT DIA: DIA is the global connector in the life sciences product development process. Our association of more than 18,000 members builds productive relationships by bringing together regulators, innovators and influencers to exchange knowledge and collaborate in an impartial setting. DIA’s network creates unparalleled opportunities for the exchange of knowledge and has the interdisciplinary experience to prepare for future developments. The dedicated efforts of DIA staff, members and speakers enable DIA to provide a comprehensive catalogue of conferences, workshops, training courses, scientific publications and educational materials. DIA is a global community representing thousands of stakeholders working together to bring safe and effective products to patients. DIA is an independent, nonprofit organization with its global center in Washington, D.C., USA; regional offices covering North and South America (Horsham, Penn., USA); Europe, North Africa and the Middle East (Basel, Switzerland); and Japan (Tokyo), India (Mumbai) and China (Beijing). For more information, visit www.diahome.org.
ABOUT NORD: NORD is a nonprofit organization established in 1983 by rare disease patient organization leaders to represent all Americans affected by rare diseases. NORD provides programs of advocacy, education, research, and patient/family services. It works closely with its approximately 200 member organizations representing people with specific rare diseases. NORD has offices in Washington DC; Danbury, CT; and Boston. Learn more about NORD at www.rarediseases.org. Follow NORD on LinkedIn, Twitter, YouTube, and Facebook.