Rare Disease News

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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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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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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Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

Published December 15, 2021 by NORD

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Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in …

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NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Published November 18, 2020 by NORD

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Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in …

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