Written by Valaree DonFrancesco on May 24, 2022
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… Read More
Written by Rohan Narayanan on May 9, 2022
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… Read More
Written by Rohan Narayanan on May 6, 2022
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… Read More
Written by Rohan Narayanan on December 15, 2021
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… Read More
Written by Valaree DonFrancesco on January 27, 2021
Washington, DC, January 27, 2021—Today, the National Organization for Rare Disorders (NORD®) and its Rare Action Network (RAN™) published the 6th Edition of the State Report Card, the annual report rating each state and Washington, DC on the most important Read More