Published September 15, 2016 by NORD
The Hill, a top U.S. political website, read by Congressional offices, the White House, political pundits, and more, today published the following op-ed by NORD President and CEO, Peter L. …
Read morePublished September 13, 2016 by NORD
The National Organization for Rare Disorders submitted comments to the Institute for Clinical and Economic Review (ICER) in response to their call for comments on how to improve their value framework …
Continue reading “ICER Comments Submitted”
Read morePublished September 12, 2016 by NORD
Please take a moment to help PSU graduate student, Kerri, make a change for the rare disease community.
Read morePublished September 12, 2016 by NORD
This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and website. It has been a productive campaign, sharing information on …
Continue reading “Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day”
Read morePublished September 9, 2016 by NORD
Written By: Kate Bartlett “I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after giving …
Continue reading “Becoming a Marathon Runner”
Read morePublished September 2, 2016 by NORD
By Peter L. Saltonstall One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA). It was intended to stimulate …
Continue reading “NORD Responds to AHIP Report on Orphan Drug Act”
Read morePublished August 18, 2016 by NORD
Researchers have the opportunity to present research to a large and diverse audience during the 2016 #NORDSummit
Read morePublished August 15, 2016 by NORD
NORD has published a new guide to help people and caregivers living with rare diseases understand expanded access and how to access unapproved medicines. In the guide, NORD answers frequently asked questions including …
Continue reading “NORD Publishes Expanded Access FAQ”
Read morePublished July 21, 2016 by NORD
On July 15, the Food and Drug Administration released the performance goals letter for the reauthorization of the Prescription Drug User Fee Act, also known as PDUFA VI. The PDUFA …
Continue reading “NORD Issues Statement in Response to PDUFA VI Commitment Letter”
Read morePublished July 15, 2016 by NORD
UPDATE: July 11, 2016 Illinois HB 4576 is close to passing! This bill would establish a Rare Disease Commission that would give patients – many of whom are too young …
Continue reading “Advocacy Alert: Illinois Rare Disease Commission Bill”
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