Rare Disease News

Final Inflation Reduction Act Guidance Risks Stifling Innovation for Rare Disease Community

Published June 30, 2023 by NORD

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Today, the Centers for Medicare and Medicaid Services (CMS) finalized a key component of the Inflation Reduction Act’s Medicare Drug Price Negotiation Program (MDPNP). Unfortunately, today’s guidance threatens vital innovation …

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NORD and the Galactosemia Foundation Jointly Publish First “Voice of the Patient” Report to Help Inform the FDA and Researchers

Published June 27, 2023 by NORD

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WASHINGTON, DC, and ALBANY, N.Y., June 27, 2023 – The Galactosemia Foundation and the National Organization for Rare Disorders (NORD)® today announced they have jointly published the galactosemia community’s first …

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National Organization for Rare Disorders Urges Congress To Protect Funding for Rare Disease Research, Commends Exclusion of Work Requirements for Medicaid in Debt Ceiling Deal

Published June 2, 2023 by NORD

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Washington, DC, June 2, 2023 – This week, the Senate passed a debt ceiling deal (HR 3746) by a 63-36 vote and which now goes to President Biden for his …

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National Network of NORD Rare Disease Centers of Excellence Expands to 40 U.S. Medical Institutions

Published May 4, 2023 by NORD

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NORD announced nine new research hospitals have been designated NORD Rare Disease Centers of Excellence, joining a network of thousands of experts committed to sharing knowledge to solve the greatest …

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NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration

Published February 27, 2023 by NORD

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May 4 Ceremony in Washington, DC will honor rare disease innovators, advocates, and partners as part of NORD’s 40th Anniversary Celebration Washington, DC, February 27, 2023—National Organization for Rare Disorders …

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NORD’s State Report Card Shows Progress for Rare Disease Patients, Highlights Remaining Barriers

Published February 7, 2023 by NORD

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Patient access to care and services improved across key policy areas in 2022, but challenges remain for the rare disease community February 7, 2023, Washington, D.C. – The National …

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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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All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome

Published August 3, 2022 by NORD

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Wasilla, Alaska, August 3, 2022—All Things Kabuki and the National Organization for Rare Disorders, Inc. have launched a study with global reach to research Kabuki syndrome, which causes a variety …

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NORD Statement on Dobbs v. Jackson

Published July 6, 2022 by NORD

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Washington, DC, July 6, 2022 – NORD was founded in 1983 with the mission of improving the lives of people living with rare diseases by expanding their access to critical and timely …

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NORD’s Living Rare Forum and Rare Impact Awards Highlight Powerful Patient Stories and Community Rock Stars

Published June 30, 2022 by NORD

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NORD’s patient centric conference showcased inspiring individuals, expert resources and presentations, and a festive celebration at the Rock and Roll Hall of Fame Cleveland, OH, June 29, 2022 – This …

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