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Sep. 4, 2015

TOPIC: Press Releases

NORD Issues Statement on NIH Appointment of New Director for Office of Rare Diseases Research

Posted by Jennifer Huron
Petra Kaufmann, M.D., M.Sc.

Petra Kaufmann, M.D., M.Sc.

The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), on the announcement that Petra Kaufmann, M.D., M.Sc., has been named director of the Office of Rare Diseases Research (ORDR), part of the National Center for Advancing Translational Sciences (NCATS) at the National Institutes of Health (NIH).

NORD congratulates Petra Kaufmann, M.D., M.Sc., in being named director of the Office of Rare Diseases Research at the NIH National Center for Advancing Translational Sciences (NCATS), an office of great importance to the rare disease community.  NORD provided advocacy for the establishment of the ORDR in the early 1990s, and we continue to view it as fulfilling a critically important role in advancing collaborative rare diseases research by working closely with researchers, patients and patient advocacy groups to maximize chances for success. 

We thank Dr. Kaufmann for her continued commitment to the rare disease patient community, as she has generously lent her expertise as a rare diseases neurologist and researcher to support NORD’s educational initiatives.  We look forward to a continued constructive relationship with Dr. Kaufmann and the ORDR as we work together to advance understanding of rare diseases and to identify and help develop safe, innovative treatments.

Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

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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/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.

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