The RARE Foundation is powered by the community we serve, dedicated to improving health outcomes by driving change through evidence-based policy and rigorous regulatory research.
We believe that the path to advocacy must be accessible to everyone; therefore, we are committed to ensuring that all of our events, programs, and advocacy resources remain free and open to the public.
This fundamental accessibility to the community is only possible through the strength of our partners.
Your support at any level ensures that financial barriers never sideline a patient or caregiver from the front lines of advocacy providing a seat at the table for every voice. Enabling us to stand as a united force for the systemic changes 30 million Americans are counting on.
How Your Support Makes an Impact:
Removing Financial Barriers to Advocacy
Funding ensures that our programs and events remain 100% free, allowing patients, families, and caregivers to engage directly with policymakers without the burden of registration or resource costs.
Empowering the Next Generation of Advocates
Contributions fuel programs that provide the training, mentorship, and financial support necessary for young leaders to claim their seat at the table.
Cultivating Community through Education and the Arts
Your support makes it possible, utilizing the power of creative expression to raise awareness, reduce the isolation of a rare diagnosis, and provide advocates with individualized coaching to share their stories with key decision makers.
Modernizing Rare Disease Pathways
Your partnership powers the coalition building, policy development, and direct FDA and Congressional outreach required to modernize the drug development ecosystem. Together, we are removing systemic barriers to ensure the regulatory and access environment keeps pace with the speed of rare disease science.
Driving Science-Led Policy Research
Your support enables us to champion science-driven solutions that address the most pressing hurdles in the rare disease space. This expertise is integrated across all our initiatives, ensuring we provide the community, Congress, and the FDA with the evidence-based frameworks necessary to modernize the path to diagnosis and treatment.
Programs You Can Sponsor
Community Congress
Community Congress is a membership-based program dedicated to bringing patient organizations, industry leaders, and other rare disease stakeholders together. Community Congress acts as a coalition of collaborators with shared priorities, providing strategic guidance and insight on policy issues and the RARE Foundation’s programs and initiatives. It is comprised of four permanent working groups that work on self-selected projects to advance policy for the rare disease community.
RARE Disease Week on Capitol Hill
RARE Disease Week on Capitol Hill is our flagship event, bringing hundreds of rare disease community members from across the country together to learn more about federal legislative issues, meet other advocates, and share their unique stories with legislators.
RARE Advocates
RARE Advocates supports the advocacy of all rare disease patients and organizations. RARE Advocates believes that every voice matters and that patients are the key to changing local, state, and federal policies. RARE Advocates provides timely information through our monthly webinars and newsletters, advocacy opportunities through RARE Disease Week and RARE Across America, and additional training opportunities through RARE Advocates Training Series and RARE Advocacy Mentorship.
State Engagement
Many critical healthcare policy decisions affecting the rare disease community are made at the state level. Through this program, the RARE Foundation is empowering advocates to become leaders in state-level change. Advocacy starts at home, and our State Engagement program provides the resources the rare disease community needs to make an impact.
State Engagement programs include: State Advocacy Days, State Advocacy webinars, Newborn Screening, Newborn Screening Bootcamp, and Rare Access Program.
Patient Engagement
We believe that all rare disease patients are experts, and their insights, preferences, and experiences must be central in legislation, policy, and therapy development considerations. Since our founding, we have been dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments, and cures. We don’t speak for patients; instead, we embolden the rare disease community to make their voices heard and drive meaningful changes through policy.
Patient Engagement Programs include: RARE Diversity, RARE Pride, Rare Young Adults, RARE Access Program, and RARE Community Grants
RARE Artist
RARE Artist is a national advocacy program where the rare disease community uses art to share their stories and drive meaningful change. Explore RARE Artist, including the annual contest and resources.
Scientific Workshop
The Scientific Workshop brings together the rare disease patient community, industry partners, agency partners, and academia to discuss urgent issues impacting the rare disease community. The biannually one-day workshops explore case studies, good practices, and gaps in evidence, with the goal of identifying actionable recommendations for advancing diagnostic, regulatory, access or public health policy.
Team RARE
A platform for visibility and a catalyst for philanthropic support that advances science-driven policy and patient engagement for the 30 million Americans living with rare diseases. By participating in high-profile events like the New York City Half Marathon and the New York City Marathon, as well as localized community fundraising efforts, our advocates amplify the rare disease experience on a national stage. We don’t just run for patients; we provide the infrastructure for the rare disease community to drive meaningful change through storytelling and collective action.
RARE Community Scholarships
Living with a rare disease may create financial barriers to education. The RARE Foundation has provided over 500 scholarships of $5,000 to help make education more accessible. Learn more about scholarships offered.
Policy Research
We partner with our community to identify critical evidence gaps and conduct rigorous policy research that translates collective data into evidence-based advocacy, empowering every advocate to back their personal story with the economic proof needed to drive systemic change.
