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Archives for: May 22nd, 2019

NORD Research Grant Program Celebrates 30th Anniversary, Funding Opportunities Announced

Written by Christina Jensen on April 30, 2019

All U.S. and international researchers are encouraged to apply by the initial application deadline of June 18, 2019

Washington, DC, April 30, 2019 – The National Organization for Rare Disorders® (NORD), the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseasesRead More

Hear from NORD’s registry community

Written by Christina Jensen on March 20, 2019

During the 2018 Rare Diseases & Orphan Products Breakthrough Summit, NORD spoke with its IAMRARE registry users to get their thoughts on how their patient registries are benefiting their communities and how they are able to use the data. See the videos below and on our Youtube channel… Read More

TAKE ACTION: Join NORD & Over 100 Patient Organizations in Supporting the RARE Act

Written by Christina Jensen on April 18, 2018
An exciting new piece of legislation known as the RARE Act (Rare disease Advancement, Research, and Education Act) of 2018 (H.R.5115) was recently introduced by Congressmen Carson and Costello. This legislation would greatly help the rare disease community by:
  • Increasing rare disease research funding at the National Institutes of Health (NIH) by authorizing an additional… Read More