Love, Advocacy, and Belonging: Reflections from a Rare Disease Ally

By Nicole Boice, Chief Mission Officer, Global Genes

As Chief Mission Officer at Global Genes—and as the proud parent of a son who is part of the LGBTQ+ community—I carry both a professional responsibility and a personal commitment to building more inclusive spaces for all. I don’t speak from lived experience, but I do speak from love, listening, and a deep belief that no one should feel invisible in their identity or alone in their health journey. This piece is offered with respect, in solidarity, and with hope for a world where everyone living at the intersection of rare disease and LGBTQ+ identity feels seen, supported, and connected.

For many, living with a rare disease means navigating a world that often doesn’t understand your needs. For LGBTQ+ individuals with rare diseases, that experience can be even more isolating—where identity and health intersect in complex, often overlooked ways.

Both communities—rare disease and LGBTQ+—are powerful, resilient, and rooted in the need for connection, advocacy, and visibility. When these identities overlap, the call for belonging becomes even more urgent—and all the more deserving of our attention.

Why Intersectionality Matters
Living with a rare disease often requires constant self-advocacy—explaining symptoms, pushing for care, and educating others. LGBTQ+ individuals face similar challenges: navigating systems not built for them, advocating for respectful and inclusive care, and finding safe spaces to be fully seen.
When someone lives at this intersection, they’re often navigating multiple layers of marginalization. They may struggle to find providers who understand their health needs and respect their identity. They may feel invisible in both communities. This is why we must name, honor, and center these experiences—not just during Pride or Rare Disease Day, but every day.

The Power of Community
What often carries people through is community—people who “get it.” Whether it’s an LGBTQ+ individual with Ehlers-Danlos syndrome connecting with someone else managing both hormone therapy and complex chronic pain, or a rare disease advocate who finds belonging in LGBTQ+ spaces, these moments of connection are lifelines.

Community tells us we are not alone.
Community affirms that our whole selves belong

We need rare disease spaces that affirm LGBTQ+ identities. And we need LGBTQ+ spaces that understand and include people with disabilities and chronic illnesses. True equity means showing up for the full, complex lives we all live.

How We Can Support Each Other

1. Start by listening. Make space for people to share their full experience—without having to fragment who they are.
2. Use inclusive language. Ask for pronouns. Normalize gender diversity. Acknowledge the spectrum of bodies, identities, and care needs.
3. Center lived experience. Elevate the stories of LGBTQ+ people with rare diseases in your campaigns, panels, and leadership.
4. Build bridges, not silos. Partner with LGBTQ+ organizations to co-host events, share resources, and support each other’s missions.
5. Keep learning. Intersectionality is not a box to check—it’s an ongoing commitment to expanding who is seen, heard, and empowered.

Because Everyone Deserves to Belong

At Global Genes, we believe that no one should feel invisible. Not because of how rare their condition is. Not because of who they are. This work—of advocacy, of care, of connection—is stronger when we bring our whole selves into it.

To everyone living at the intersection of rare and LGBTQ+: you are not an afterthought. You are a vital part of this movement. We see you. We need you. We stand with you.

Be part of something bigger this June. Whether you’re sharing a story, hosting an event, or lifting up a friend—you’re helping build the community we all need. No matter where you are, your people are out there. Let’s find each other.