Rare & Radiant Pride Briefing
June 27, 2026
2:00 - 6:50pm EST
Virtual Pop-In Style Webinar
SOS is proud to host our annual open forum dedicated to LGBTQIA+ voices in the rare disease space. This is a powerful opportunity to build community, elevate unheard perspectives, and chart a new path forward, together. We are here to focus on the barriers, inequities, and experiences faced at this critical intersection.
What to Expect
A relaxed, joyful, drop-in style Pride event designed to build community while doing the work
Featured speakers from across the rare disease ecosystem
Each speaker will offer a reflection on their lived experience and professional insights at the queer/rare intersection
We’ll highlight challenges in care, clinical trials, policy inclusion, systemic inequities, and access barriers
By the end, we’ll collaboratively shape a public-facing list of LGBTQIA+ Rare Policy & Access Priorities for the next year
Why Join?
This space was designed by and for LGBTQIA+ rare disease advocates, but all are welcome, including allies, policymakers, nonprofit leaders, and anyone interested in helping build a more inclusive and equitable rare disease future.
You can come for one speaker or stay for the whole session. The tone is relaxed, celebratory, and empowering. Pop in, vibe out, and raise your voice.
Objectives
Bring LGBTQIA+ rare stakeholders together across silos
Create a safe, celebratory platform for storytelling and power-sharing
Surface key gaps and needs currently missing from national conversations
Develop a working list of tangible, actionable intersectional priorities for the year ahead
Provide the entire community with a resource to take forward into advocacy, research, and care initiatives
