Press Releases Archives - NORD (National Organization for Rare Disorders)

May 24, 2022

TOPIC: Uncategorized, Press Releases, Featured News, Advocacy, RDACs

Connecticut Establishes a Permanent Rare Disease Advisory Council

Posted at May 5, 2022 04:07 pm by Valaree DonFrancesco

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 state of Connecticut. Connecticut established a temporary rare disease task force in 2017 that concluded its work in 2019, but the Rare Disease Advisory Council created as part of HB… Read More

Tags: advocacy, Rare Action Network, Public Policy, Connecticut, Policy, Rare Disease Advisory Council, Project RDAC

May 11, 2022

TOPIC: Press Releases, Advocacy

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

Posted at May 5, 2022 04:42 pm by Rohan Narayanan

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 to foster robust rare disease drug development. Last week, leaders of the House Energy and Commerce Committee included language in their bipartisan Food and Drug Amendments… Read More

Tags: Congress, Orphan Drug Act, Senate, ODA, RARE Act, Senator, Senator Bill Cassidy, Senator Tammy Baldwin, Food and Drug Amendments of 2022, HR 7667, Retaining Access and Restoring Exclusivity Act, Catalyst Pharms., Inc. v. Becerra

May 9, 2022

TOPIC: Press Releases, RDACs

Maine Elevates Rare Disease Voices, Establishes State Advisory Council

Posted at May 5, 2022 04:09 pm by Rohan Narayanan

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, Maine’s rare disease community celebrated the passage of Legislative Document 972 (LD 972), which officially establishes a Rare Disease Advisory Council (RDAC) in Maine…. Read More

Tags: Rare Disease Advisory Council, RDAC, Maine, ME, Representative Margaret Craven, Legislative Document 972, LD 972

May 6, 2022

TOPIC: Press Releases, Advocacy, RDACs

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

Posted at May 5, 2022 11:57 am by Rohan Narayanan

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 signed legislation into law to establish a Rare Disease Advisory Council (RDAC) in Georgia. This advisory body will be comprised of a variety of stakeholders including patients, caregivers, health care… Read More

Tags: NORD, advocacy, Georgia, Advocate, Rare Disease Advisory Council, Beth Nguyen, RDAC, Project RDAC, Governor Kemp, Brian Kemp, Heidi Ross

April 29, 2022

TOPIC: Press Releases, Research

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

Posted at April 4, 2022 01:01 pm by Rohan Narayanan

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®) announced three new requests for proposal (RFP) for grant funding related to the following rare diseases: Autoimmune Polyglandular Syndrome Type 1 (APS-1), Levy-Yeboa… Read More

Tags: FDA, research, treatment, grant, Levy-Yeboa Syndrome, Autoimmune Polyglandular Syndrome Type 1, APS-1, LYS, Megacystis Microcolon Intestinal Hypoperistalsis Syndrome, MMIHS, Jayne Holtzer Rare Disease Research Grants Program, therapy

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