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Archives for: January 27th, 2021

NORD Launches Project RDAC, Announces Inaugural Meeting on December 16

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

The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Written by Lisa Sencen on May 20, 2019

Representative Sarah Davis is a dedicated champion of the rare disease community in her home state of Texas. She is currently serving her fifth term as the State Representative for Texas House District 134, located in Houston, Texas. In Representative Davis’ role as Chair of the Appropriations Subcommittee… Read More

NORD Issues Statement Regarding Governor Bevin’s Veto of Kentucky Senate Bill 7

Written by Valaree DonFrancesco on April 11, 2018

Washington, D.C., April 11, 2018 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement regarding Governor Matt Bevin’s Veto of SB 7, the Kentucky Rare Disease Advisory Council:

“Last week, Kentucky Governor Matt Bevin vetoed Senate… Read More