Date: June 5, 2026
Time: 4-Hour Drop-In Webinar 2:00pm EST – 6:50pm EST
Location: Virtual
SOS is proud to host our annual open forum dedicated to LGBTQIA+ voices in the rare disease space. This is more than just a webinar—it’s a historic opportunity to build community, elevate unheard perspectives, and chart a new path forward, together. The LGBTQIA+ rare disease community exists—but hasn’t had a secure or visible platform to unite, speak out, and organize around its shared needs. This event is 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