Rare Disease News

The Orphan Drug Act turns 40 – and rare disease champions from around the country came to celebrate and show their continued support on Capitol Hill.

Published January 26, 2023 by NORD

Categorized in -

Alone we are Rare. Together we are strong. This motto exemplifies the mindset of the rare disease community and is as true today as it was 40 years ago. The …

Continue reading “The Orphan Drug Act turns 40 – and rare disease champions from around the country came to celebrate and show their continued support on Capitol Hill.”

Congress’ Year-End Legislative Package Delivers for the Rare Community

Published December 23, 2022 by NORD

Categorized in -

As part of H.R. 2617, Congress today delivered several crucial programs and reforms that are important to the rare disease community — measures that NORD and the rare community fought …

Continue reading “Congress’ Year-End Legislative Package Delivers for the Rare Community”

Highlights from #NORDSummit Session: Mental Health and Rare Cancers

Published November 21, 2022 by NORD

Categorized in -

One of the most popular sessions at NORD’s 2022 Rare Disease and Orphan Products Breakthrough Summit was the session, “Mental Health and Rare Cancers.” Attendees had the opportunity to gain …

Continue reading “Highlights from #NORDSummit Session: Mental Health and Rare Cancers”

Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023

Published November 16, 2022 by NORD

Categorized in -

With 100 days till Rare Disease Day 2023, organizations and individuals across the country join the National Organization for Rare Disorders (NORD) to help make a difference for rare disease patients …

Continue reading “Rare Disease Advocates and Supporters Share the Importance of Raising Awareness Ahead of Rare Disease Day 2023”

Maybe Obscure to You, but Life-Changing for Millions of Americans

Published November 15, 2022 by NORD

Categorized in -

126 Organizations Urge Congress to Include Critical FDA Programs and Reforms in Year-End Spending Bill In a letter authored by NORD and signed by 126 organizations representing or treating patients …

Continue reading “Maybe Obscure to You, but Life-Changing for Millions of Americans”

Highlights from the 2022 NORD Breakthrough Summit

Published November 1, 2022 by NORD

Categorized in -

Last month, more than 830 enthusiastic attendees gathered in-person (and many more virtually) for the 2022 NORD Rare Diseases and Orphan Products Breakthrough Summit to address and take action on …

Continue reading “Highlights from the 2022 NORD Breakthrough Summit”

Help for rare disease patients impacted by recent 2022 hurricanes

Published October 6, 2022 by NORD

Categorized in -

NORD’s Hurricane Emergency Relief Fund provides limited financial assistance to those with a rare disease who are victims of natural disasters. Emergency relief funds may be requested once per household/per …

Continue reading “Help for rare disease patients impacted by recent 2022 hurricanes”

NORD Statement on Passage of the Inflation Reduction Act

Published August 12, 2022 by NORD

Categorized in -

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 …

Continue reading “NORD Statement on Passage of the Inflation Reduction Act”

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

Published July 19, 2022 by NORD

Categorized in -

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 …

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

Connecticut Establishes a Permanent Rare Disease Advisory Council

Published May 24, 2022 by NORD

Categorized in -

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 …

Continue reading “Connecticut Establishes a Permanent Rare Disease Advisory Council”