Written by Rohan Narayanan on November 18, 2021
As Congress continues to debate the policies to include in the final version of the Build Back Better Act, the House of Representatives has inexplicably chosen to take aim at one of the most vulnerable populations in our nation: the rare disease community. The Build Back Better Act, H.R…. Read More
Written by Rohan Narayanan on October 29, 2021
The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, issued the following statement in response to newly introduced draft of the Build Back Better Act (H.R. 5376):
Peter Saltonstall, CEO and President of NORD, stated: “As negotiations continue on the Build Back Better Act, NORD urges… 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 14, 2018
Washington, D.C., March 14, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement in regards to last night’s vote in the House of Representatives on the latest version of the Right to Try Act:
“Yesterday… Read More
Written by Lisa Sencen on March 13, 2018
Yesterday evening, NORD joined 82 patient and provider organizations in sending a letter to the House of Representatives stating our opposition to the newest version of the Right to Try Act that was released on Saturday and is scheduled for a vote today.
While this version contains considerable improvements to patient… Read More