Your Support Helps Advance Science-Driven Policy and Advocacy
We work to ensure that the voices, experience, insights, and evidence of rare disease patients and families shape legislation and regulatory action—driving meaningful change that expands access to timely diagnoses, life-changing treatments, and comprehensive care.
We do this through policy research projects that help drive policy through data.
Your Support Empowers Advocates Through Our Events and Lobby Trainings
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Rare Disease Week
Brings hundreds of advocates from around the country to Washington, DC to meet directly with lawmakers and advance rare disease policy priorities.
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RARE Advocates
Provides year-round training, tools, and mentorship to help advocates build relationships with policymakers and influence legislative priorities.
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RARE Across America
Connects advocates with their Members of Congress in local districts to build ongoing policy engagement via in-person and virtual meetings.
Your Support Allows us to Engage the Community Through Our Programs
- RARE Young Adults - Equips young adults with leadership skills, policy knowledge, and a platform to influence change and build community with peers.
- RARE Artist – Elevates the voices and perspectives of the rare disease community through creative expression using several different mediums.
- RARE Pride – Engages community members to better understand the issues, resources, and possibilities for further development at the intersection of rare disease and LGBTQIA+ identities.
- RARE Community Scholarships – Offers life-changing financial support to students living with rare diseases, helping them pursue higher education and achieve their academic and career goals.
Your Support Helps us Fill Critical Gaps in the Rare Disease Ecosystem
From convening cross-sector leaders to advancing new efforts in therapy development, we are driving progress by producing actionable research on delayed diagnosis, economic burden, and meaningful patient engagement, tackling the challenges others can’t or won’t address to ensure rare disease voices shape the development of treatments and that critical needs are met.
Help us amplify the voices of the rare disease community to drive meaningful change and influence policy.
For questions about your donation to the RARE Foundation, email philanthropy@rareadvocates.org.
All donations are fully tax-deductible by law. Tax ID # 26-4614274
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Our Impact
Since our founding in 2009, we have reshaped the rare disease landscape thanks to the power of our community.
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About RARE Foundation
The RARE Foundation is a nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy.
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Ways to Give
Our programs are made possible through the generosity of supporters like you.
