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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The RARE Foundation believes it is critical for policymakers and regulators to hear directly from rare disease patients and caregivers. That’s why our Community Grants program supports organizations that engage patients, caregivers, and others in the community in advocacy and public policy. Organizations are required to have a 501(c)3 designation to be eligible to apply. Organizations based in the United States and internationally are eligible to apply. 

Applications for 2027 funding are now open.

What do Community Grants support?

Event Sponsorships

RARE Community Grants support conferences and meetings held by 501(c)3 non-profit organizations that educate their audiences about the importance of public policy and advocacy to ensure the development of new treatments and access to diagnostics and treatments for rare disease patients.

The program also financially supports externally led Patient-Focused Drug Development meetings that provide patients and caregivers with the opportunity to share insight on rare diseases. 

Tools and Resources Grants

RARE Community Grants provides support for tools for 501(c)3 non-profit organizations to empower patient communities to engage in policy including (but not limited to): 

• translation services, 
• survey abilities, 
• patient experience data collection efforts, 
• ICD code nomination or activities related to publications of advocacy initiatives and research such as an Institutional Review Board and publication fees, and more. 
• Patient registries are not eligible for funding under the tools and resources sponsorship. 

Travel Reimbursements

Travel reimbursements enable rare disease advocates from across the country to participate in RARE Disease Week on Capitol Hill and in public meetings hosted by the Food and Drug Administration (FDA) and National Institutes of Health (NIH).

To support patient advocate travel to RARE Disease Week on Capitol Hill, the RARE Foundation has a limited number of travel reimbursements available for caregivers of patients needing accommodations to attend with the patient. The caregiver travel reimbursements are available on a first-come, first-serve basis until they are expended. 

Please contact us at advocacy@rareadvocates.org  for more information or to request a caregiver reimbursement. 

If you have any questions about sponsoring the RARE Community Grants program, please contact us at fundraising@rareadvocates.org.