Events

Rare Disease Week on Capitol Hill brings 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. While we had hoped to host this event in-person, for the safety of all advocates, Rare Disease Week will be going virtual for 2021.
Virtual Rare Disease Week on Capitol Hill 2021 will be held July 14th through July 22nd and will include the same opportunities as in-person Rare Disease Week, plus more!

Registration will open on April 21st.