Rare Disease News

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

Published June 30, 2022 by NORD

Categorized in -

Press Releases

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 …

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

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

Published June 9, 2022 by NORD

Categorized in -

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”

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

Published June 9, 2022 by NORD

Categorized in -

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”

Connecticut Establishes a Permanent Rare Disease Advisory Council

Published May 24, 2022 by NORD

Categorized in -

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”

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

Published May 11, 2022 by NORD

Categorized in -

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”

Maine Elevates Rare Disease Voices, Establishes State Advisory Council

Published May 9, 2022 by NORD

Categorized in -

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”

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

Published May 6, 2022 by NORD

Categorized in -

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”

NORD Announces over $100,000 in Grant Funding Available for Rare Disease Research

Published April 29, 2022 by NORD

Categorized in -

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”

NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Published April 25, 2022 by NORD

Categorized in -

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”

The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome

Published April 19, 2022 by NORD

Categorized in -

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 …

Continue reading “The Snow Foundation for Wolfram Syndrome Research and NORD® Launch Natural History Study of Wolfram Syndrome”