Featured News Archives - NORD (National Organization for Rare Disorders)

August 12, 2022

TOPIC: Press Releases, Featured News, Advocacy

NORD Statement on Passage of the Inflation Reduction Act

Posted at August 8, 2022 05:48 pm by Rohan Narayanan

Washington, DC, August 12, 2022 – Following the passage of the Inflation Reduction Act, Peter L. Saltonstall, President and CEO, the National Organization for Rare Disorders (NORD), issued the following statement:

“The Inflation Reduction Act is a significant step forward in helping ensure that individuals and families with rare diseases have access to the… Read More

Tags: rare disease, orphan drug tax credit, Senate, House of Representatives, U.S. House of Representatives, Reconciliation, Inflation Reduction Act, NORD, Advanced Premium Tax Credits, Rare Diseases, Congress, Orphan Drug Act

July 19, 2022

TOPIC: Get Involved, Featured News, Advocacy

Take Action on July 19: Help End Harmful Step Therapy Policies By Urging Congress to Support the Safe Step Act

Posted at July 7, 2022 11:17 am by Valaree DonFrancesco

On Tuesday, July 19, join rare disease advocates and coalition partners across the nation for a social media day of action to urge Congress to pass the Safe Step Act (HR 2163/S 464). This bill would help people with rare diseases access prescribed medications in a safe and timely manner, by ensuring step therapy is appropriately utilized. Too… Read More

Tags: Rare Action Network, step therapy, safe step act

May 24, 2022

TOPIC: Advocacy, RDACs, Uncategorized, Press Releases, Featured News

Connecticut Establishes a Permanent Rare Disease Advisory Council

Posted at May 5, 2022 04:07 pm by Valaree DonFrancesco

May 24, Hartford, CT – Yesterday, Governor Ned Lamont signed House Bill 5500 (HB 5500) into law which includes provisions to establish a permanent Rare Disease Advisory Council (RDAC) in the state of Connecticut. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created as part of HB… Read More

Tags: advocacy, Rare Action Network, Public Policy, Connecticut, Policy, Rare Disease Advisory Council, Project RDAC

April 22, 2022

TOPIC: Featured News

The Running for Rare Team Crossed Another Finish Line

Posted at April 4, 2022 11:03 am by Valaree DonFrancesco

On Monday, April 18, seven members of NORD’s Running for Rare team stretched their legs and put their sneakers to the pavement to take on the Boston Marathon! During the race, NORD staff members Jaime Pacheco, Ed Neilan, Julie Manus, Amanda Thomas and 36 individuals were present and could be heard loudly from the cheer section.

In addition to running,… Read More

Tags: Boston Marathon, Running for Rare

October 29, 2021

TOPIC: Press Releases, Featured News, Advocacy

NORD Response to New Draft of the Build Back Better Act

Posted at October 10, 2021 01:07 pm by Rohan Narayanan

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 Congress to remove this harmful provision which would gut a key incentive from the 1983 Orphan… Read More

Tags: Build Back Better, Build Back Better Act, Reconciliation, Bill, Congress, Orphan Drug Act, legislation, ODTC, orphan drug tax credit, Senate, House of Representatives

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