Written by Laura Mullen on December 2, 2019
Do you have questions about gene editing and how it may advance the treatment of people with rare diseases? Much has been written lately about the promise of CRISPR and other gene-editing tools as future treatments for many rare diseases.
NORD is creating a new educational video… Read More
Written by Laura Mullen on October 29, 2019
On the heels of the 2019 Rare Diseases and Orphan Products Breakthrough Summit, NORD’s Rare Action Network (RAN) Volunteer State Ambassadors made their way to Capitol Hill on October 23, 2019, to tell their stories and show their stripes. Ambassadors from 20 states… Read More
Written by Lisa Sencen on May 7, 2019
Washington, DC, May 7, 2019 – The National Organization for Rare Disorders (NORD)Ⓡ, the leading independent nonprofit organization representing the 25-30 million Americans living with rare diseases, has announced its development of key drug pricing principles, created with the needs of the rare disease community in mind.
People living with rare… Read More
Written by Lisa Sencen on March 18, 2019
Today, Representatives GK Butterfield and Gus Bilirakis introduced a resolution that celebrates the success of the Orphan Drug Act (ODA) and calls for continued support of the legislation.
Now in its 36th year, the ODA has successfully encouraged the pharmaceutical industry to develop therapies for those with rare diseases. Prior to… Read More
Written by Lisa Sencen on December 18, 2018
Washington, D.C., December 18, 2018 — A new report commissioned by the National Organization for Rare Disorders (NORD) and published today by the IQVIA Institute, demonstrates that the seven-year market exclusivity granted to drugs designated under the Orphan Drug Act of 1983 for rare diseases is working as… Read More