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
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
Written by Lisa Sencen on April 25, 2018
Patrick Dunegan and his wife, Jennifer, met at church, spending time together serving their local community as Kentucky Colonels and through volunteer work with the Jewish Hospital… Read More
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
Written by Lisa Sencen 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