Published June 2, 2023 by NORD
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 …
Read morePublished May 4, 2023 by NORD
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 …
Read morePublished March 3, 2023 by NORD
Watch CNBC’s Rare Disease Day interview with NORD President and CEO Peter L. Saltonstall and NORD Rare Disease Center of Excellence Director, Dr. Olaf Bodamer of Boston Children’s Hospital, where …
Read morePublished February 27, 2023 by NORD
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 …
Continue reading “NORD Announces 2023 Rare Impact Award Honorees and 40th Anniversary Celebration”
Read morePublished February 7, 2023 by NORD
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 …
Read morePublished August 26, 2022 by NORD
Rare disease patients experience inequities in diagnosis, care, and research due to a paucity of research, lack of treatments, complex needs for clinical care, and small and dispersed patient populations, …
Read morePublished August 12, 2022 by NORD
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 …
Continue reading “NORD Statement on Passage of the Inflation Reduction Act”
Read morePublished August 3, 2022 by NORD
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 …
Continue reading “All Things Kabuki and NORD® Launch Natural History Study of Kabuki Syndrome”
Read morePublished July 6, 2022 by NORD
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 …
Continue reading “NORD Statement on Dobbs v. Jackson”
Read morePublished June 30, 2022 by NORD
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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