Written by Lisa Sencen on August 7, 2019
The collaborative project between the organizations will kick off at a launch meeting in September and will aim to reduce barriers for the development of new treatments and cures for rare diseases.
TUCSON, Ariz. and WASHINGTON, Read More
Written by Lisa Sencen on July 31, 2019
Washington, DC, July 31, 2019—The National Organization for Rare Disorders (NORD)®, the leading independent nonprofit organization representing the over 25 million Americans with rare diseases, has announced the Patient/Caregiver Opening Address speakers for the 2019 NORD Rare Diseases & Orphan Products Breakthrough Summit, to be held October 21-22 in… Read More
Written by Lisa Sencen on June 3, 2019
Real-world evidence and compelling case studies bring to life the challenges facing the estimated 30 million Americans fighting to live better with rare disorders
Washington, DC, June 3, 2019—The National Organization for Rare Disorders® (NORD), the leading independent nonprofit… 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 March 8, 2019
Last week, a NORD Member Organization and IAMRARE™ Registry Client, The APS Type 1 Foundation Inc., officially launched their patient registry, APS Type 1 (APECED) Registry. NORD’s IAMRARE Registry Program was built to address the special needs of those developing treatments for rare… Read More