Take Action

Future advocate opportunities TBD

Dear Colleagues,

Join us for an in-person gathering on Wednesday, March 1, at 5:00 – 6:00 pm ET, at 1400 I Street, NW, Suite 525, Washington, DC (over the McPherson Square Metro stop) in BioMarin’s offices to discuss federal legislative language, EPICrd – the Ensuring Parity through Individualized Care for Rare Disorders Act. The draft bill would comprehensively address disparities in Medicaid coverage of treatments, items, supports, and services for rare conditions. BioMarin has been a supporter of our efforts.

Your partners in advocacy,

Terri Klein, National MPS Society
Brett Kopelan, debra of America
Dean Suhr, MLD Foundation

EPICrd News

Come learn more about EPICrd at the Rare & Ready booth at the 2024 NORD Rare Summit in Washington, DC, on October 20 – 22.