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 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 March 3, 2022
NORD Releases New Toolkit to Inform and Guide Patient Advocacy Groups to Improve and Prioritize Equity and Accessibility in the Rare Disease Community
Washington, DC,… Read More
Written by Maia Craig on February 3, 2022
Members of the rare disease community go through many challenging issues regarding health equity, the diagnostic odyssey, access and affordability to proper treatments, and more. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family… Read More
Written by Maia Craig on January 24, 2022
Being a family member or friend of someone with a rare disease can be a challenging experience. The National Organization for Rare Disorders (NORD) is sharing formerly exclusive, paid content from our 2021 virtual Living Rare, Living Stronger Patient and Family Forum to inspire hope and share experiences for… Read More