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September 4, 2015

TOPIC: Press Releases

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

Posted by Jennifer Huron

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… Read More

August 31, 2015

TOPIC: Featured News

Miss Connecticut Talks to NORD about Rare Diseases, the Miss America Pageant, and Voting for America’s Choice

Posted by Jennifer Huron

Miss Connecticut Colleen WardNext month, millions of Americans will tune in to watch the Miss America Pageant, airing live on ABC on September 13, 2015, from Atlantic City, New Jersey.  We were excited to speak with Miss Connecticut Colleen Ward, who will represent the State of Connecticut, where NORD’s headquarters… Read More

August 31, 2015

TOPIC: Sticky Posts for Homepage, Sticky Posts for Patients and Families

NTM Info & Research Inc.

Posted by Christina Jensen
Feat Image for Web

NTM Info & Research Inc.’s mission is to save and improve lives through research, education, early detection, and improved treatments for people with pulmonary nontuberculous mycobacterial (NTM) disease.

1.)   What does it mean to you personally to be a patient organization serving the rare community?

Our work means building awareness in the medical community, driving research forward and helping patients who face… Read More