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Archives for: July 19th, 2022

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

Written by Rohan Narayanan on June 9, 2022

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… Read More

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

Ashlee’s Story in Honor of Rare Disease Day

Written by Valaree DonFrancesco on February 12, 2021

was diagnosed with primary immunodeficiency (PI) when I was four years old. The adversities I have faced with rare disease started even before I received a life-saving diagnosis and are still something I struggle with today. In studying to be a health care Read More