Rare Disease News

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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Colorado Becomes 24th State to Establish a Rare Disease Advisory Council

Published June 9, 2022 by NORD

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New RDAC will help educate the public, medical professionals, and government officials about rare diseases and identify solutions to improves the lives of those living with rare diseases June 9, …

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NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022

Published June 9, 2022 by NORD

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WASHINGTON, June 8, 2022—Today, the U.S. House of Representatives passed by a vote of 392-28 the Food and Drug Amendments of 2022 (H.R. 7667), legislation with significant implications for millions …

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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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NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act

Published May 11, 2022 by NORD

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Washington, DC — The National Organization for Rare Disorders (NORD) applauds efforts of Congressional leaders to protect the Orphan Drug Act (ODA) and ensure proper incentives are in place to …

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Maine Elevates Rare Disease Voices, Establishes State Advisory Council

Published May 9, 2022 by NORD

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Maine becomes the 23rd state to create a council that will help address the needs of rare disease patients and their families May 9, 2022, Augusta, ME – Today, …

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Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

Published May 6, 2022 by NORD

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New council will help educate medical professionals, government agencies, legislators, and the public about rare diseases, research and treatment May 6, 2022, Atlanta, GA – This week, Governor Brian Kemp …

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