Guided by the highest standards of ethics, integrity, and responsible stewardship, the RARE Foundation upholds core principles in its work across the rare disease community with a rigorous commitment to transparent financial reporting.
Our Core Principles
Formerly known as the EveryLife Foundation for Rare Diseases, the RARE Foundation upholds the following core principles:
- We are patient-centric, ensuring the interests of the rare disease patient communities are energetically promoted and vigorously defended.
- We specifically pursue science-driven legislation and evidence-based policy.
- We are purposefully broad to benefit all patients with rare diseases and accordingly, do not endorse disease-specific legislation.
- We model our commitment to inclusion and equity as an employer and in our policy agenda.
- We vet all partnerships to align with internal policies and oversight.
Financial Statements and Annual Reports
Governance
- Officer, Director, and Key Employee Conflict of Interest Policy
- Board Meeting Confidentiality Policy
- Bylaws
- Diversity Policy
- Fundraising Disclosure Statement
- Funding Policy
- IRS Determination Letter
- Whistleblower Policy
