Empowering Rare Disease Advocates: EveryLife Foundation Launches 2026 Rare Giving Program for Community Support

EveryLife Foundation Launches 2026 Rare Giving Program

The EveryLife Foundation for Rare Diseases is excited to announce that applications are currently being accepted for the 2026 Rare Giving program. This initiative is crucial in supporting advocacy efforts led by patients, caregivers, and community organizations dedicated to making substantial changes in public policy related to rare diseases. Applications will be open until October 24, 2025, with winners announced by the end of the year.

The Importance of the Rare Giving Program

The Rare Giving program is designed to empower 501(c)(3) nonprofit and grassroots organizations that directly engage patients and caregivers in advocacy and policy discussions. This essential support amplifies the voices of those affected by rare conditions, ensuring their experiences and advocacy efforts can lead to significant policy changes.

Moreover, the program also provides travel reimbursements for individual advocates who need financial assistance to attend Rare Disease Week—an event critical for sharing personal stories with lawmakers. In 2025, the EveryLife Foundation awarded a total of $195,841 in travel reimbursement to 181 advocates, enabling them to participate in advocacy efforts.

Michael Pearlmutter, CEO of the EveryLife Foundation, stated, "Empowering the rare disease community with the resources to engage in advocacy is essential to shaping policies that reflect their needs. Rare Giving ensures that patients and caregivers have a seat at the table where decisions about access, research funding, and care are made."

Funding for Advocacy and Education

Beyond travel assistance, the Rare Giving program also funds conferences organized by 501(c)(3) nonprofits to educate audiences about the value of advocacy and policy change. These educational events are vital for fostering the development of innovative therapies for rare disease patients.
The program further enables community engagement in federal agency processes, including public hearings, where patients and caregivers can voice their insights on various topics, including investigational product regulatory review and newborn screening discussions.

Additionally, Rare Giving awards provide funds for data collection efforts, translation services, and other advocacy-related resources. Activities like these are crucial in ensuring that the rare disease community is well-represented in public policy debates.

Shannon von Felden, the Vice President of Advocacy at the EveryLife Foundation and head of the Rare Giving program, emphasizes the program’s role in enhancing participation: "Although we offer free conference registration, educational resources, and mentorship, there are still financial barriers for some nonprofits and individuals. The Rare Giving program helps ensure that more voices can advocate for rare disease issues with legislators nationwide."

Join the Movement

With the continued growth of Rare Giving, the EveryLife Foundation expresses gratitude to its sponsors who support the advocacy efforts of community members. This program not only strengthens individual voices but also fosters a collective presence that influences legislative outcomes. For those seeking to make an impact in advocating for rare diseases, now is the time to apply for the Rare Giving program and join a movement that champions the rights and needs of patients.

For further details about the Rare Giving program and how to apply, visit EveryLife Foundation's website. Follow the foundation on social media platforms like Facebook, X, Instagram, and LinkedIn for updates and more insights into ongoing advocacy efforts.

About EveryLife Foundation

The EveryLife Foundation for Rare Diseases is a nonprofit, nonpartisan organization committed to improving health outcomes for the rare disease community by advocating for evidence-based policy and regulatory research about rare diseases. With a strong focus on driving change and empowering impacted individuals, the organization plays a pivotal role in enhancing the lives of those affected by rare diseases.