About the RARE Pride Program

Why it Matters

LGBTQIA+ individuals with rare diseases face distinct challenges, compounded by social stigma and inequity, which can impact their access to diagnosis, healthcare, and innovative medicines.

RARE Pride aims to dismantle these barriers and foster a supportive environment, enhancing care and advocacy at this crucial intersection.

Pride in RARE:

• Celebrate Diversity: Acknowledge and support the unique challenges at the intersection of LGBTQIA+ and rare disease identity.
• Foster Community: Provide a platform for resource sharing and discussions on issues affecting the LGBTQIA+ rare disease community.
• Advocate for Change: Drive legislative and educational initiatives that impact both LGBTQIA+ and rare disease communities.

Community Engagement & Support

• Join Us: Engage in our events to help shape our policy initiatives.
• Contribute: Participate in surveys to track trends and expand our toolkit of resources.
• Promote: Help disseminate information about our community, events, and resources.

Together We Can Address

• Healthcare Discrimination: LGBTQIA+ individuals are twice as likely to encounter negative experiences in healthcare settings.
• Mental Health Needs: 67% of LGBTQIA+ community members needed mental health services in the past two years, indicating a critical need for specialized support.
• Limited Resources: Only 16% of surveyed rare disease patient advocacy organizations offer specific resources for LGBTQIA+ individuals with rare diseases.
• Need for Support: 40% of surveyed rare disease patient advocacy organizations are interested in offering support to the LGBTQIA+ rare disease community but lack the necessary resources.