On this Rare Disease Day, we are honored to announce the National Organization for Rare Disorders (NORD) has awarded the Alliance to Cure Cavernous Malformation this year’s prestigious Abbey S. Meyers Leadership Award. There are 2000 rare disease organizations, 330+ of which qualify to be members of NORD. NORD recognizes one organization each year for its leadership in rare disease advocacy. The 2023 Abbey S. Meyers Leadership Award will be granted to the Alliance to Cure Cavernous Malformation on May 4th during NORD’s Rare Impact Awards event at the National Portrait Gallery. We are being recognized, specifically, for creating the Baca Family Historical Project and Breaking Barriers for Black Health Empowerment which serve as models for outreach to under-resourced and frequently underserved patient communities, and for our work creating an infrastructure to drive research and trials.
NORD is the first and largest umbrella organization for rare diseases; its focus is legislative advocacy and patient organization development. Abbey S. Meyers founded NORD in the early 1980s and was a true pioneer in patient advocacy, leading the organization until her retirement in 2009. Her efforts led to the creation and passage of the Orphan Drug Act of 1983, which incentivizes the development of treatments for rare diseases. We are direct beneficiaries – Recursion’s REC-994 was given orphan drug designation, making the path to approval somewhat easier.
“We are humbled to receive the Abbey S. Meyers Leadership Award. Abbey remains a role model who blazed a path for all of us. This award increases our resolve to work creatively and strategically to bring better care and cures to all,” said Alliance to Cure CEO Connie Lee.