Written by Christina Jensen on July 12, 2017
Washington, D.C., July 12, 2017 – The National Health Council (NHC) and the National Organization for Rare Disorders (NORD) commend the House of Representatives for passing the FDA Reauthorization Act (FDARA) with overwhelming bipartisan approval.
Passing this bill is a crucial step in reauthorizing four user fee programs that ensure the Food… Read More
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
Written by Jennifer Huron on September 30, 2016
32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017
Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers Performance Los Angeles Marathon, it was announced today by… Read More