RDACs 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 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

December 15, 2021

TOPIC: Press Releases, Advocacy, RDACs

Celebrating Advocacy, Action and a Year of Success Building Rare Disease Advisory Councils

Posted at December 12, 2021 07:56 am by Rohan Narayanan

Seven Rare Disease Advisory Councils Established Since Launch of NORD’s Project RDAC

Washington, DC – December 15, 2021 – In 2015, the first rare disease advisory council was created in North Carolina by patients, caregivers, families, and providers. This year, the National Organization for Rare Disorders (NORD), the leading advocate for the over 25 million Americans living with a rare… Read More

Tags: NORD, rare disease, Peter Saltonstall, New Jersey, Virginia, Rare Disease Advisory Council, RDAC, Florida, Louisiana, Massachusetts, Ohio, South Carolina

November 18, 2020

TOPIC: Press Releases, Featured News, Advocacy, RDACs

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

Posted at November 11, 2020 09:15 am by Valaree DonFrancesco

Washington, DC, November 18, 2020—With a mission of empowering and equipping the rare disease community to effectively engage decision-makers within their state governments, the National Organization for Rare Disorders (NORD®) has launched an initiative that will assist in building well-organized, high-functioning Rare Disease Advisory Councils (RDACs)… Read More

Tags: Rare Disease Advisory Council, Rachel Sher, Horizon Therapeutics, RDAC, Vice President, Policy and Regulatory Affairs for NORD