Rare Disease Week 2026 in Washington, DC was a powerful and inspiring gathering that brought together patients, caregivers, advocates, and industry leaders united by a shared mission: to advance research and improve outcomes for rare diseases, including ocular melanoma.
Hosted in partnership with the EveryLife Foundation, A Cure In Sight (ACIS) proudly participated in this impactful week from February 23–26. The event created space for meaningful dialogue, where voices from across the rare disease community came together to share experiences, ask important questions, and discuss promising developments in research and treatment. These conversations are essential—not only for raising awareness but for shaping the future of care for those living with rare conditions.
A key focus of the week was advocacy on Capitol Hill. ACIS joined fellow advocates in meeting directly with Congressional leaders to emphasize the urgent need for increased federal funding for rare disease research, improved access to treatments, and continued innovation. By sharing real patient stories and highlighting the unique challenges of ocular melanoma, the group helped ensure that this rare cancer remains part of the national conversation.
In preparation for these meetings, ACIS hosted a planning session to align messaging and strengthen advocacy efforts. This collaborative approach ensured that patient perspectives remained at the center of every discussion. The day concluded with a shared dinner, offering an opportunity to deepen connections, reflect on the day’s progress, and build lasting relationships within the community.
The energy and momentum carried throughout the week were undeniable. From open conversations to impactful meetings, every moment contributed to moving the mission forward. Most importantly, it reinforced that when the rare disease community comes together, real change is possible.
As the week came to a close, one message was clear—we are just getting started. Plans are already underway for Rare Disease Week 2027, with hopes to grow this movement even further. Together, we will continue to raise our voices, advocate for change, and drive progress for the ocular melanoma and rare disease communities.