Rare Disease Day

A Cure In Sight (ACIS) will be joining the EveryLife Foundation to meet with Congressional leaders in Washington, D.C. to advocate for increased federal funding for rare disease research, including ocular melanoma. These meetings are a vital opportunity to elevate patient voices, share real-world experiences, and highlight the critical need for continued investment in research, innovation, and access to care for those affected by rare cancers.

In advance of these meetings, ACIS will convene a dedicated planning session to develop a clear, unified message to deliver to Congressional leaders. This time together will allow advocates to align on key priorities, strengthen talking points, and ensure patient perspectives remain at the center of the discussion. The day will conclude with a shared dinner, providing space for connection, reflection, and collaboration as the group prepares to represent the ocular melanoma community on Capitol Hill.

A Cure in Sight (ACIS) will be joining the EveryLife Foundation in Washington, DC for Rare Disease Week! Together, we’ll meet with Congressional leaders to discuss the urgent need for funding rare disease research and improving access to treatments.

To unite patients, caregivers, researchers, and advocates to create a strong, clear message for our Members of Congress — one that ensures the rare disease community is heard.

Let’s raise our voices together for the rare disease community. Your voice matters — see you in DC!