Written by Lisa Sencen on July 19, 2019
Washington, DC, July 19, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, announces the appointment of four new members to its Board of Directors, effective immediately.
Joining the Board of… Read More
Written by Lisa Sencen on March 7, 2018
Thank you to our rare disease partners and every person who worked to heighten awareness on Rare Disease Day® in 2018. On this day, everyone comes together globally to bring attention to all 7,000 rare diseases that combined affect 30… Read More
Written by Lisa Sencen on August 15, 2017
It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare… Read More
Written by Lisa Sencen on July 20, 2017
Washington, D.C. July 19, 2017 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, has announced two keynote speakers for its 2017 Rare Diseases and Orphan Products Breakthrough Summit, to be held October 16-17 in Washington, D.C.
The… Read More
Written by Jennifer Huron on December 13, 2016
Today, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation. The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients, including: