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
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.
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 www.diahome.org and follow DIA at: LinkedIn, Twitter, YouTube, Facebook, Flickr and Pinterest.
Eric Rosen | +1.215.290.9153 | Eric.Rosen@diahome.org
Mary Dunkle | 203.744.0100 ext. 217 | Mdunkle@rarediseases.org