The RARE Foundation is committed to emboldening the advocacy activity of all members of the rare disease community and creating pathways for historically underserved communities to engage in policy change, advocacy training, clinical trials, and the therapy development process.
The LGBTQIA+ Rare Disease Community
People affected by a rare disease who belong to historically underserved communities often face increased and complex barriers to healthcare. This is true for the LGBTQIA+ rare disease population who may have limited opportunities for:
- access to safe spaces
- involvement in policy and legislative efforts
- opportunities to participate in advocacy events
As a result, there is limited data, awareness, and proposed policy solutions that could lead to improved access to care for this community. 40% of surveyed rare disease patient advocacy organizations are interested in offering support to the LGBTQIA+ rare disease community but lack the necessary resources1.
What does RARE Pride do?
- Provides a platform for resource sharing and community discussions on issues affecting the LGBTQIA+ rare disease community
- Offers advocacy training so community members feel confident sharing their story and unique experiences as someone in the LGBTQIA+ community living with or caring for someone with a rare disease
- Drives educational and legislative initiatives for the RARE Pride community
- Provides tools and resources for rare disease patient advocacy organizations to help them support their LGBTQIA+ community members
I often feel like my identity is boxed into the diagnosis label I have, and everything else falls by the wayside. But there’s so much more to me than just my experience with rare disease — I can’t abandon my queerness when I enter any space. It’s incredible to see the [RARE Foundation] actively making space for our queerness in our rare disease community. I’m not just a zebra, I’m a rainbow zebra, and it’s wonderful to finally have extra space to dazzle!
Katie Greenstein
(they/she)
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Now is the Time to Act
In 2023, the RARE Foundation hosted a series of focus groups with members of the LGBTQIA+ rare disease community. Advocates shared experiences and goals for equitable access to diagnosis, treatments, and cures. This momentum led the RARE Foundation to launch an LGBTQIA+ initiative. Our advocates helped us better understand the current issues, resources, and places for further development. The momentum of the initiative led to an expansion of this effort.
In 2024, the RARE Foundation launched our LGBTQIA+ program, RARE Pride. This program allows advocates to engage in discussions and resource sharing, and impact policy for both the rare and LGBTQIA+ community. RARE Pride gives the community a distinct advocacy space for those living within the intersection of LGBTQIA+ identity and rare disease patient experiences.
Background on the HIV/AIDS Movement
A powerful example of the intersection of our LGBTQIA+ and rare community exists in the roots of the establishment of the Accelerated Approval pathway during the HIV/AIDS epidemic.
As the AIDS epidemic was ravaging their community, HIV/AIDS activists, including LGBTQIA+ activists and their allies, protested the US Food and Drug Administration (FDA) in the late 1980s. They demanded quicker pathways for the review and approval of medications to fight against AIDS. In response to activists’ patient advocacy, the FDA created the accelerated approval pathway in 1992.
This allows for conditions with extreme urgency and unmet needs to use a surrogate endpoint or biomarker to determine a drug’s effectiveness. This is a safe pathway that allows for quicker drug development for diseases that cannot wait. In 2012, the Accelerated Approval pathway expanded to rare diseases through a reauthorization of an FDA user fee agreement. As we work to close the innovation gap for the 95% of rare diseases with no FDA-approved treatments, we will continue to create spaces for all advocates to be empowered to make change.
Development and Advancement
Since 2023, the RARE Foundation has been engaging with the LGBTQIA+ rare disease community to address issues, highlight stories, and find opportunities for growth. In February 2024, the RARE Foundation hosted a Diversity, Equity, Inclusion and Accessibility session at Rare Disease Week. This featured several presentations, including, “The Intersectionality of LGBTQIA+ and Rare Disease” by William Romero.
Thank You to Our 2026 Sponsors
1RARE Foundation. 2023 Annual Community Congress Member Survey.
