2SLGBTQIA+ Rare Disease Community Priorities

The Rare & Radiant Pride Briefing is a space where community voices help shape meaningful advocacy priorities at the intersection of rare disease, chronic illness, and 2SLGBTQIA+ identity.

Each year, participants, speakers, advocates, caregivers, professionals, and community members come together to identify critical gaps, urgent needs, and opportunities for change across different healthcare sectors. The priorities outlined here reflect those collective conversations and serve as an evolving roadmap for advocacy, awareness, and action throughout the year.

This page exists as a living resource that centers community-driven insight, accountability, collaboration, and the belief that those most impacted should help guide the future of the work. Together, we are building a more inclusive, equitable, and affirming future for rare and chronically ill 2SLGBTQIA+ communities.

Policymakers at All Levels

  • Support research funding, incentivize orphan drug development, increased newborn screening access and updates, regulation of medical costs, access to hormone replacement therapy and related care, reproductive health care, and policies improving data equity, clarity, and protection.

  • Oppose all anti-2SLGBTQIA+ bills, criminalization of and loss of privacy related to HIV and STIs, policies allowing intersex genital mutilation, cuts to Medicaid, addition of Medicaid work requirements, exclusion of undocumented immigrants from healthcare, increases in copay costs, bans on gender transition care, bans and funding prohibitions on abortion care, and all proposals that would limit access to care.

Federal Agencies

  • Improve clarity in drug labeling to reduce harms of white labeling to patients for the sake of profit.

  • Continually develop guidance for Contract Research Organizations (CROs) and regulatory bodies on how to bring together patient communities, industry, payers, and agencies to collaborate on shared issues.

Healthcare Providers

  • Understand patients as people beyond their diagnosis.

  • Proactively seek training and connections with patient advocacy groups to understand rare diseases, 2SLGBTQIA+ populations, intersex variations, and best practices for serving these populations.

  • Push against cisheteronormativity and stigma around intersex bodies.

  • Take the time to learn about complex conditions when treating patients. Own up to mistakes and misdiagnoses.

Industry & Researchers

  • Collaborate with patient organizations to continually get to know those impacted by products and include patients as stakeholders from the beginning of research and development. Continually access resources developed by patient advocates to learn about what matters most to them in therapy development from the beginning.

  • Reframe strategic outreach to patient communities to connect with, listen to, and build trust with them to promote more inclusive and diverse clinical trials with culturally competent language. Thouroughly share information about the investigation and desired outcomes for transparency, even when keeping more detailed information for internal use only.

  • Learn about common experiences in patient populations and consider how strict criteria and boilerplate language may limit significant demographics of patient community, rare or ultra-rare variants of conditions, and those with multiple common comorbidities in addition to the primary condition being studied.

Patient Advocacy Groups (PAGs)

  • Connect with other stakeholders and use your voice to advocate for community priorities.

  • Develop and share resources with allies on how to support someone through a diagnosis or discovering their identity.

  • Consider who is invited and who is not in the room when planning events.

  • Proactively work with diverse communities to reach patients where they are at.

Payers/Insurance

  • Expand telemedicine access.

  • Improve coverage of off label treatments.

  • Improve access to whole genome sequencing.

Reminders for 2SLGBTQIA+ Rare Disease Community Members

  • Understand yourself and your intersectionality. Get to know your mind, body, and spirit, keeping in mind that you are the expert of you. Take up space and embrace yourself, hold your power.

  • Set boundaries, not to evade conflict, but to take care of yourself. Remember that you cannot take care of anyone else without taking care of yourself first.

  • Build intergenerational and cross-community relationships.

  • You are strong and resilient, put it into action.

Reminders for Allies

  • Support organizations that build networks, fund research, and provide emotional support to patient communities.

  • Understand that being 2SLGBTQIA+ and being rare, ultra-rare, and/or undiagnosed are all natural variations of being human.

  • Health equity means every identity, every story, every single time.