Jun. 30, 2016
Posted by Jennifer Huron
Commissioner Califf will provide an opening Keynote Address. As the senior official of the FDA, Commissioner Califf leads the federal agency charged with review and approval of potential new medicine and medical therapies. Over the past two years, the FDA has approved more orphan drugs to treat rare diseases than in any other year in its history; in 2015, approximately 47 percent of novel, new drugs (21 of 45) approved by the FDA were approved to treat rare or “orphan” diseases. There are 7,000 rare diseases that affect 200,000 or fewer Americans. The majority still have no treatment.
It was also announced today that top leaders from across the FDA will speak at the Summit and address critical issues that affect the rare disease community, including Peter Marks, M.D., Ph.D., Director, Center for Biologics Evaluation and Research, and Janet Woodcock, M.D., Director, Center for Drug Evaluation and Research.
NORD’s Summit will take place Oct. 17-18 at the Hyatt Regency Crystal City in Arlington, Virginia. The full agenda will be announced in the coming weeks. The Summit is the largest multi-stakeholder event in rare diseases. To learn more or to register, visit www.nordsummit.org.
Established in 1983, NORD is the leading independent advocacy organization representing all patients and families affected by rare diseases. NORD is committed to the identification, treatment and cure of the 7,000 rare diseases that affect 30 million Americans, or 1 in every 10 people, most of whom are children.
NORD began as a small group of patient advocates that formed a coalition to unify and mobilize support to pass the Orphan Drug Act of 1983. For more than 30 years, NORD has led the way in voicing the needs of the rare disease community through programs of advocacy, education, research, and patient/family services. NORD represents more than 250 disease-specific member organizations and collaborates with many other organizations in specific causes of importance to the rare disease patient community.
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