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Archives for: May 20th, 2019

The Honorable Sarah Davis: 2019 Rare Impact Award Honoree

Written by Christina Jensen 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 Laura Mullen 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

Rare Disease Advisory Council Bill Moves through Pennsylvania House

Written by Christina Jensen on June 29, 2017

Update: June 29, 2017–Today, H 239, a bill that would establish a Rare Disease Adviosry Council and provide Pennsylvania’s 1.2 million rare disease patients with a voice in the state government, passed in the Senate. Director of State Policy at the National Organization for Rare Disorders (NORD), Tim Boyd, said,… Read More