Public Policy Archives - NORD (National Organization for Rare Disorders)

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

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Written by Heidi Ross on December 10, 2015

2015 was a bellwether year for the NORD public policy team and some exciting growth was seen that could not have come at a better time; the next few years will be some of the most critical in rare disease public policy since the inception of the Orphan Drug Act… Read More

Archives for: May 24th, 2022

Connecticut Establishes a Permanent Rare Disease Advisory Council

Written by Valaree DonFrancesco on May 24, 2022

Be a Hero: Help NORD Empower the Rare Disease Community in Washington D.C. and in all 50 States.

Written by Heidi Ross on December 10, 2015

Alone we are rare. Together we are strong.®