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 February 22, 2022
NORD’s State Report Card Provides Critical Analysis Across Nine Policy Areas, Including Telehealth, Drug Costs, Medicaid Eligibility, and More
February 22, 2022, Washington, DC – Today, the National Organization for Rare Disorders (NORD®) published the latest edition of its annual State Report Card, which rates all 50 states and Washington, DC… 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 November 18, 2020
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 RareRead More