Getting Started
The RARE Foundation hosts virtual info sessions regularly. Join us to connect with the community and explore ways to get involved in advocacy. View upcoming sessions and register to join.
For Advocates
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Every Voice Matters
Welcome! RARE Advocates supports the advocacy of all rare disease patients and organizations. Using your voice, sharing your rare disease story and joining others to amplify the message, brings the needs of the rare disease community to the attention of local, state, and federal government officials.
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Advocacy Mentorship Program
Our Mentorship Program is a year-round support system for advocates who are seeking more 1:1 support in their advocacy development, while giving experienced advocates the opportunity to hone their leadership skills.
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RARE Advocate Training Series
A free, six-week seminar series for advocates with prior advocacy experience hosted by RARE Advocates.
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Trainings and Videos
All the resources and tools you need to begin your advocacy journey with the RARE Foundation.
When I started this journey, I thought that there was some “special recipe” to advocacy, but really, it’s about owning your story and connecting with why your story is a story for all. My goal as a mentor is to help other advocates learn to cherish their story and feel confident using their voice.
Paloma Juarez
2026 Rare Disease Week Advocacy Chair
For Young Adults & Students
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RARE Young Adults
RARE Young Adults brings together motivated members of the rare disease community, ages 16–30, to build confidence, strengthen advocacy skills, and create meaningful impact in public policy.
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Community Scholarships
Living with a rare disease may create financial barriers to education. The RARE Foundation provides Community Scholarships to help make education more accessible.
YARR [now RARE Young Adults] became a safe place for me to connect with fellow advocates and feel supported while growing in my rare disease advocacy journey. YARR has helped shape me into the person I am today.
Shea Linton
2025 YARR Leadership Academy Graduate
For Patient Advocacy Groups
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Community Congress
Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together.
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Rare Disease Congressional Caucus
The Rare Disease Congressional Caucus provides a vital platform for discussing pressing policy issues on rare diseases.
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RARE Community Hub
The RARE Community Hub is a shared workspace in Washington, DC, created by the RARE Foundation to give the rare disease community a place to convene and collaborate.
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RARE Community Grants
RARE Community Grants support organizations that engage patients, caregivers, and others in the community in advocacy and public policy.
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RARE Access Program
The RARE Access Program is a unique training program offered to Patient Advocacy Groups who wish to increase their work in the access space.
For Artists
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RARE Artist
RARE Artist is a national advocacy program where the rare disease community uses art to share their stories and drive meaningful change.
For Underrepresented Communities
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RARE Pride
RARE Pride aims to enhance advocacy efforts for individuals in the LGBTQIA+ rare disease community while fostering a supportive environment.
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RARE Diversity
The RARE Foundation is committed to empowering ALL rare disease patients through advocacy and to create pathways for underserved communities to engage in policy change, clinical trials, and the drug development process.
