RDACs Archives - NORD (National Organization for Rare Disorders)

June 9, 2022

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

Posted at June 6, 2022 03:07 pm by Rohan Narayanan

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, 2022, Denver, CO – Today, Governor Jared Polis signed Senate Bill 186 (SB 186) into law to create a Rare Disease Advisory Council (RDAC), making Colorado the 10th state to… Read More

Tags: legislation, RAN, Rare Action Network, Rare Disease Advisory Council, colorado, RDAC, Bill, Governor Jared Polis, Jared Polis, CO

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