The EveryLife Foundation for Rare Diseases Provides Funds to Advocates & Patient Advocacy Groups

Applications for 2026 Rare Giving Program Now Open

WASHINGTON, June 17, 2025 /PRNewswire/ -- The EveryLife Foundation for Rare Diseases (EveryLife Foundation) is proud to announce that applications are open for the 2026 Rare Giving program, a core initiative designed to support patient, caregiver, and community-driven advocacy and public policy efforts across the rare disease landscape. Applications will be open until October 24, 2025, and awards will be announced before the end of the year.

The Rare Giving program funds 501(c)3 nonprofit and grassroots organizations that actively involve patients, caregivers, and advocates in advocacy and policy engagement. By supporting such efforts, the EveryLife Foundation amplifies the voices and lived experiences of those directly affected by rare conditions to influence meaningful changes in public policy. Additionally, as part of the Rare Giving program, the EveryLife Foundation provides travel reimbursements for individual advocates who may need assistance to attend Rare Disease Week. In 2025, the EveryLife Foundation awarded $195,841 in travel reimbursements to 181 advocates.

While the EveryLife Foundation provides resources and support to the rare disease community free of charge, the Rare Giving program allows more families to attend important events where they can share their story with lawmakers by supporting travel expenses. "Empowering the rare disease community with the resources to engage in advocacy is essential to shaping policies that reflect their needs," said Michael Pearlmutter, CEO of the EveryLife Foundation. "Rare Giving ensures that patients and caregivers have a seat at the table—where decisions are made about access, research funding, and care."

Aside from travel reimbursements, Rare Giving supports conferences and meetings held by 501(c)3 non-profit organizations that educate their audiences about the importance of public policy and advocacy to encourage the development of new therapies for rare disease patients. The program also financially supports communities to meaningfully engage in federal agency proceedings including Open Public Hearings convened during federal advisory committee meetings related to regulatory review of investigational products, newborn screening conditions, and Patient-Focused Drug Development meetings that provide patients and caregivers with the opportunity to share insight on rare diseases, and more.

Rare Giving awards also financially support 501(c)3 non-profit organizations, empowering patient communities to engage in policy, and support resources including translation services, survey tools, patient experience data collection efforts, and ICD code nomination or activities related to publications of advocacy initiatives and research such as an Institutional Review Board and publication fees.

Shannon von Felden, Vice President of Advocacy at the EveryLife Foundation who leads the Rare Giving program, attributes increased participation in events like Rare Disease Week to programs like Rare Giving: "While the EveryLife Foundation is proud to offer free conference registration, easy access to educational resources, and mentorship for new advocates, we know that there are still sometimes financial barriers that make it difficult for nonprofit organizations and individuals in our community to participate. The Rare Giving program helps ensure more voices have the opportunity to advocate with legislators across the country. This program continues to grow, and we are so grateful to our sponsors who help support our advocates."

Learn more about EveryLife's Rare Giving program.

About the EveryLife Foundation for Rare Diseases:

The EveryLife Foundation for Rare Diseases is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

To learn more, visit EveryLifeFoundation.org and follow us on Facebook, X, Instagram, and LinkedIn.

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SOURCE EVERYLIFE FOUNDATION FOR RARE DISEASES