Rare Disease Advocate Noah Coughlan Completes his #Run4Rare Across America Days Before House Vote on 21st Century Cures
This past weekend, there were many reasons to celebrate. Over the holiday, rare disease advocate Noah Coughlan completed an impressive 3,100-mile run to raise awareness for rare diseases. Noah’s efforts run parallel to the 21st Century Cures initiative, the committee’s nonpartisan effort to incentivize more research for rare diseases, streamline the drug and device development process, and accelerate the process of getting cures and treatments to those who need them most.
“Coughlan’s journey was dubbed ‘Run For Rare’ to raise awareness about rare diseases affecting 30 million Americans,” San Diego’s local Fox 5 reports. “The California native had similar cross-country runs in 2011 and 2013. He is the third person to cross America on foot three separate times.” Noah told reporters, “I’m truly running for the one in a million — every life matters.”
Near the start of Noah’s journey, he stopped in Washington, D.C., to meet with representatives and discuss the 21st Century Cures Act. So many advocates like Noah have helped to shape this landmark legislation that seeks to help provide hope to all families.
Noah joins E&C members Reps. Gus Bilirakis (R-FL) and Leonard Lance (R-NJ) at a press conference on Capitol Hill
Noah Meets with Chairman Fred Upton (R-MI) and Rep. Diana DeGette (D-CO)
Learn more about the 21st Century Cures Act HERE.