Latest News

National Survey Reveals Impact of COVID-19 on People Living with Rare Diseases and Their Families

The devastating impact of COVID-19 on the general population is well-documented—but less is known about the millions of people living with rare diseases.

Flyer advertising the survey appearing on a laptop screen.

Dr. Robert Desnick and Dr. Cynthia Tifft to Receive Rare Impact Awards

June 3 2017

Photos of 2017 Rare Impact Award winners Dr. Robert Desnick and Dr. Cynthia Tifft appear on a turquoise background

Central IRB Impact

June 1 2017

Spotlight on an RDCRN Consortium: The Porphyrias Consortium

June 6 2016

RDCRN Investigators and Patient Advocacy Groups – A Partnership

June 4 2016

Q&A with Petra Kaufmann, MD, MSc, Director Office of Rare Diseases Research (ORDR)

January 6 2016

Rare Disease Research Training Program

January 4 2016

The Orphan Drug Act and National Organization for Rare Disorders Celebrate 30th Anniversary

June 7 2013

National Organization for Rare Disorders Honors the RDCRN at their Annual 'Partners in Progress' Gala

June 3 2012