Published June 9, 2022 by NORD
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, …
Continue reading “Colorado Becomes 24th State to Establish a Rare Disease Advisory Council”
Read morePublished June 9, 2022 by NORD
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 …
Continue reading “NORD Applauds House Passage of H.R. 7667, the Food and Drug Amendments of 2022”
Read morePublished May 24, 2022 by NORD
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”
Read morePublished May 11, 2022 by NORD
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 …
Continue reading “NORD Applauds Congressional Efforts to Restore Intent of the Orphan Drug Act”
Read morePublished May 9, 2022 by NORD
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, …
Continue reading “Maine Elevates Rare Disease Voices, Establishes State Advisory Council”
Read morePublished May 6, 2022 by NORD
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 …
Continue reading “Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council”
Read morePublished April 29, 2022 by NORD
Three RFPs Now Open for Qualified Researchers through NORD’s Jayne Holtzer Rare Disease Research Grants Program April 29, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) …
Continue reading “NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research”
Read morePublished April 25, 2022 by NORD
April 25, 2022, Washington DC—-The National Organization for Rare Disorders (NORD) today issued a statement of tribute to the life and service of the late Senator Orrin Hatch (R-UT), who …
Continue reading “NORD Pays Tribute to Life and Service of Senator Orrin Hatch”
Read morePublished April 19, 2022 by NORD
Clayton, MO, April 19, 2022 —Today, April 19, 2022, The Snow Foundation for Wolfram Syndrome Research and the National Organization for Rare Disorders, Inc. launched the largest-ever study to research …
Read morePublished April 8, 2022 by NORD
90 Patient Organizations Sign-on to NORD Letters to Secretary Becerra and Congressional Leaders on Strengthening the Accelerated Approval Pathway April 8, 2022, Washington, DC – This week, the National Organization …
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