Advocacy 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 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 25, 2022

TOPIC: Press Releases, Advocacy

NORD Pays Tribute to Life and Service of Senator Orrin Hatch

Posted at April 4, 2022 04:14 pm by Rohan Narayanan

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 passed away over the weekend.

“Over his many years in Congress, Senator Hatch demonstrated his commitment to public health and his concern for the millions of… Read More

Tags: Congress, Orphan Drug Act, Capitol Hill, Senate, Washington DC, Senator Orrin Hatch, Rare Disease Congressional Caucus, Orrin Hatch, US Congress, Utah

April 8, 2022

TOPIC: Press Releases, Patients & Members, Advocacy

ICYMI: Rare Disease Community Takes Action to Strengthen and Reform Accelerated Approval

Posted at April 4, 2022 09:15 am by Rohan Narayanan

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 for Rare Disorders (NORD), along with 90 other patient organizations sent letters to Health and Human Services (HHS) Secretary Xavier Becerra andRead More

Tags: Congress, HHS, Capitol Hill, Senate, Department of Health and Human Services, House, Health and Human Services, accelerated approval, accelerated approval pathways, Xavier Becerra, Congressional Leadership

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