Rare Disease Week on Capitol Hill

Nick Manetto and Sarah-Lloyd Stevenson each presented during Rare Disease Week on Capitol Hill, an annual event to bring together rare disease community members from across the country to be educated on federal legislative issues, meet other advocates and share their unique stories with legislators. Nick and Sarah-Lloyd work with the EveryLife Foundation for Rare Diseases, a nonprofit organization that hosts Rare Disease Week. Over the course of the week, Nick and Sarah-Lloyd each provided a deep dive into rare disease policy priorities of the community and offered the “inside the beltway” perspective on how to advocate to Capitol Hill.