WORKSHOP
The rare disease journey is complex—but no advocate should have to navigate it alone. This Workshop serves as a Resource Hub that brings together essential information every stakeholder needs to take action, find support, and spark change. Whether you’re fighting for policy reform, diving into clinical trial access, pushing for equity, or navigating the world of histiocytosis, this hub equips you with trusted resources, real-time data, and tools for impact. Because informed advocates build empowered communities—and empowered communities drive lasting change.
Policy doesn’t change unless we speak up—and it hits differently when the people most impacted are leading the conversation. This section is your launchpad into rare disease policy: created by a patient who’s been in the hospital bed, the Hill meeting, and the briefing room. Whether you’re just starting out or already raising your voice, here you’ll find tools, templates, and insights to help make the system work with us, not against us. This is advocacy, activated. Learn more
Clinical trials are often seen as intimidating or inaccessible—but they shouldn’t be. Patients deserve transparency, inclusion, and support when exploring research as a care option. This space breaks down the clinical trial process through the eyes of someone who knows what it means to put your life in science’s hands. From learning the basics to demanding better representation, you’ll find resources here to help you navigate trials on your terms—with clarity, courage, and confidence. Learn more
Equity in rare disease isn’t optional—it’s overdue. As a Black queer rare disease survivor, I’ve seen how systemic gaps in care, access, and research continue to harm historically excluded communities. This section shines a light on those gaps—and equips you with the data, language, and tools to challenge them. Because everyone deserves a fair shot at survival, dignity, and care that reflects who they are. Solidarity starts here. Learn more
Histiocytosis may be rare—but the people living with it are not alone. This space was built from my own story with HLH and XIAP deficiency, and it exists to inform, support, and connect those navigating similar paths. Whether you’re newly diagnosed, a caregiver, or an advocate seeking clarity, Histiocytosis Central provides approachable education, helpful links, and firsthand perspective you can trust. We may be zebras, but here, we run together. Learn more
At the intersection of rare and identity is a powerful truth: our stories carry the potential to spark real change. This section is a hub for LGBTQ+ and BIPOC rare disease advocates—and for anyone committed to building a more inclusive future. Explore downloadable toolkits, campaign resources, and collaborative opportunities designed to help you show up fully in your advocacy. Visibility is power, and here, your whole self is welcome. Learn more