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Archives for: May 24th, 2022

Connecticut Establishes a Permanent Rare Disease Advisory Council

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

Georgia Becomes 22nd State to Establish a Rare Disease Advisory Council

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

NORD’s Pamela Gavin Interviewed on Health Equity by PharmaBoardroom for Rare Disease Day

Written by Valaree DonFrancesco on February 26, 2021

PharmaBoardroom, an international pharmaceutical industry media outlet providing industry trends, news and reports geared to senior professionals, recently interviewed Pamela Gavin on the importance of health equity and what NORD is doing towards achieving equity for the rare community in the United States.

The interview can be read in its entirety… Read More