Rare Disease News

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

Published November 16, 2022 by NORD

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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 …

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

Published November 15, 2022 by NORD

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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 …

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Highlights from the 2022 NORD Breakthrough Summit

Published November 1, 2022 by NORD

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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 …

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Help for rare disease patients impacted by recent 2022 hurricanes

Published October 6, 2022 by NORD

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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 …

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NORD Statement on Passage of the Inflation Reduction Act

Published August 12, 2022 by NORD

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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 …

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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

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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 …

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Connecticut Establishes a Permanent Rare Disease Advisory Council

Published May 24, 2022 by NORD

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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 …

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The Running for Rare Team Crossed Another Finish Line

Published April 22, 2022 by NORD

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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 …

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NORD Response to New Draft of the Build Back Better Act

Published October 29, 2021 by NORD

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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 …

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Rare Cancer Day 2021: Bryce’s Clear Cell Sarcoma Story

Published September 30, 2021 by NORD

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Bryce was able to get diagnosed with clear cell sarcoma (CCS) quickly. He tries not to think about it but finds it virtually impossible because he knows that there is …

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