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Funding Policy

We seek and accept funding from philanthropic organizations, government entities, individual donors, and corporations to support our work in the rare disease community.

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The RARE Foundation 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 achieve our goals, we partner with patient organizations, individuals with lived experience, corporate entities, and other stakeholders involved in the development and dissemination of treatments. We do not advocate for or endorse any companies, products, technologies, clinical trials, or specific therapies. The RARE Foundation uses a patient‑centric lens to identify and advance policy changes that benefit patients across the rare disease community.

The RARE Foundation pursues policy solutions in accordance with the five core policy goals defined by our Community Congress members. This approach ensures that our policy priorities reflect the rare disease community’s most pressing needs.

Community Congress is a membership-based program that brings together patient organizations, industry leaders, and other rare disease stakeholders. This strategic advisory council provides guidance and insight on urgent policy issues impacting the rare disease community.

Our five core policy goals

  1. Close the innovation gap for the 93% of rare diseases that have no FDA-approved treatment
  1. Eliminate the diagnostic odyssey for rare disease patients
  1. Improve the regulatory process and advance regulatory science for rare disease therapies
  1. Ensure patient access to safe and efficacious therapies and cures at the earliest moment possible
  1. Empower patients to develop an impactful voice in policymaking, drug development, and regulatory decision-making

The RARE Foundation receives financial support from a mix of charitable institutions, governmental sources, individual contributors, and corporate donors.

We solicit both restricted and unrestricted funds, and accept endowments, stock, money and in-kind services. For individuals and trusts, we accept gifts directed to the Foundation through an existing endowment held at the Marin Community Foundation, which ensures the Foundation’s policy work is independent, free from influence, and focused on community needs.

The Foundation promotes positive collaborative policy positions that advance impactful change or improvements. When we receive funds that are designated for a specific purpose, we report those activities to our donors. We comply with all IRS disclosure rules and are fully transparent about our funding sources.

We offer event sponsors visibility and recognition, but not the ability to determine program content.

We award travel stipends to patients, caregivers, and other rare disease advocates to ensure that legislators and regulators hear directly from the rare disease community. Recipients of travel stipends as well as all participants in RARE Disease Week and RARE Across America programs are not required to discuss any specific legislation or initiative. The Foundation does not speak for patients, but instead provides training, education, resources, and opportunities to make their voices heard.

The Foundation exercises independent judgement in all decision-making related to current and prospective corporate relationships. Each relationship must provide a meaningful mission-related benefit to the public or rare disease community and must adhere to all applicable state and local laws and regulations. All decisions to solicit and/or accept potentially controversial gifts will be made by the Board of Directors in consultation with the Chief Executive Officer. While the primary consideration will be the impact of the gift on the Foundation, we reserve the right to withdraw sponsor benefits without a refund should a sponsor’s actions negatively affect our reputation or standing in the community. All contributions are reviewed with consideration for their impact and the best interest of the Foundation and the rare disease community. The RARE Foundation reserves the right to revoke sponsorship benefits, without refund, if a sponsor’s conduct harms the Foundation’s reputation or community standing.

Governance