Officer, Director, and Key Employee Conflict of Interest Policy

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Article I – Summary

Purpose. The following conflict of interest policy protects the interests of the RARE Foundation (formerly known as EveryLife Foundation for Rare Diseases and herein referred to as the “Organization”) when it is contemplating entering into a transaction or arrangement that might benefit, or appear to benefit, the private interests of an officer, director, or key employee, or result in a possible excess benefit transaction.

Scope. This policy applies to the Organization’s Board of Directors and its key employees. It is designed to supplement—not replace—any applicable state and federal laws that govern conflicts of interest for nonprofit and charitable organizations.

Responsibilities. Officers, directors, and key employees are entrusted with serving the public interest. Their decisions must solely be guided by a commitment to advancing the Organization’s mission, its best interests, and the public good.

A conflict of interest arises when personal or financial considerations may influence—or appear to influence—the judgment or ability of an officer, director, or key employee to make impartial decisions in the best interest of the Organization. Conflicts may be financial or non-financial in nature. For example, if a board member takes a position or supports another organization that is counter to the organization’s mission and principles, this action can be deemed a conflict of interest.

All officers, directors, and key employees are required to become familiar with this policy and to disclose fully to the Organization all relationships (personal, family, or business) that could create the perception of a conflict of interest. In most cases, disclosure is all that is required.

Article II – Definitions

Interested Persons. Any director, principal officer, or key employee who has a direct or indirect financial or non-financial interest, as defined below, is an interested person. A key employee under this policy is a Vice President, Senior Vice President, or a person holding a Chief-level position.

Financial Interest. A person has a financial interest if the person has, directly or indirectly, through business, investment, or family:
- An ownership or investment interest in any entity with which the Organization has a transaction or arrangement;
- A compensation arrangement with the Organization or with any entity or individual with which the Organization has a transaction or arrangement;
- A potential ownership or investment interest in, or compensation arrangement with, any entity or individual with which the Organization is negotiating a transaction or arrangement; or
- A material relationship, whether present or past, involving service as a director, officer, or employee of any entity that has, or is currently negotiating, a transaction or arrangement with the Organization.

Compensation includes direct and indirect remuneration, as well as gifts with a value of $500.00 or more, and favors that are not insubstantial.

A financial interest is not necessarily a conflict of interest. Under Article III, Section 2, a person who has a financial interest may have a conflict of interest only if the appropriate governing board or board committee decides that a conflict of interest exists.

Non-Financial Interest. A person has a non-financial interest if the person, a family member, or a closely associated entity has a personal, familial, or professional relationship that may raise an actual or a perceived conflict of interest in carrying out duties in the best interest of the Organization.

Family Member. A family member is defined as a spouse, domestic partner, sibling(s), children, grandchildren, great grandchildren, and the spouses or domestic partners of children, siblings(s), grandchildren, and great-grandchildren.

Compensation. Compensation refers to any form of direct or indirect remuneration, economic benefit, or payment for Services provided by an interested person to the Organization. Compensation expressly excludes the reimbursement of reasonable and necessary out-of-pocket expenses incurred by a director, officer, or committee member in the performance of their official duties for the Organization.

Article III – Procedures

Duty to Disclose. In connection with any actual or possible conflict of interest, an interested person must disclose the existence of financial or non-financial interest and be given the opportunity to disclose all relevant material facts to the Organization considering the proposed transaction or arrangement.

Determining Whether a Conflict of Interest Exists. After disclosure of the financial or non-financial interest and all material facts and after any discussion with the interested person (including a presentation by the disclosing party if they desire one), a board committee that does not include the disclosing party shall determine whether a conflict of interest exists. If it is determined that no conflict of interest exists, no further review is necessary. If it is determined that a conflict of interest does exist, then the conflict of interest shall be addressed in the manner set forth below.

Procedures for Addressing the Conflict of Interest.
- Review. A board committee will review conflicts of interest and determine whether further board action is necessary.
- Board Presentation. If a conflict of interest exists, a disclosing person may make a presentation at the governing board or board committee meeting. Except when specifically requested to provide information by the governing board or committee, the disclosing person must leave the room and be absent during the discussion and vote on the transaction or arrangement involving a possible conflict.
- Appointment of Disinterested Persons. If appropriate, the chairperson of the governing board or board committee shall appoint a disinterested person or committee to investigate alternatives to the proposed transaction or arrangement.
- Final Determination and Vote. The governing board or board committee must document its due diligence, including considering alternatives that do not give rise to a conflict of interest. The disinterested directors will then vote to confirm whether the transaction or arrangement is in the Organization’s best interest and is fair and reasonable. Only upon approval by a majority vote shall the transaction or arrangement be authorized.

Violations of the Conflict of Interest Policy.
- If the governing board or board committee has reasonable cause to believe an interested person has failed to disclose actual or possible conflicts of interest, it shall inform the interested person of the basis for such belief and afford the interested person an opportunity to explain the alleged failure to disclose.
- If, after hearing the interested person’s response and after making further investigation as warranted by the circumstances, the governing board or board committee determines the interested person has failed to disclose an actual or possible conflict of interest, it shall take appropriate disciplinary and corrective action including but not limited to removal from the interested person’s position as an officer, director, or key employee.

Article IV – Records of Proceedings

An appendix of governing board and all board committees shall serve as a permanent record and contain:

The names of the persons who disclosed or otherwise were found to have a financial or non-financial interest in connection with an actual or possible conflict of interest, the nature of the financial or other interest, any action taken to determine whether a conflict of interest was present, and the governing board’s or board committee’s decision as to whether a conflict of interest in fact existed.

The names of the persons who were present for discussions and votes relating to the transaction or arrangement, the content of the discussion, including any alternatives to the proposed transaction or arrangement, and a record of any votes taken in connection with the proceedings.

The record of any determination regarding the existence of a conflict, including the underlying basis and specific justification for the board or committee’s final decision.

Article V – Compensation

A voting member of the governing board who receives compensation, directly or indirectly, from the Organization for services is precluded from voting on matters pertaining to that member’s compensation.

A voting member of any committee whose jurisdiction includes compensation matters and who receives compensation, directly or indirectly, from the Organization for services is precluded from voting on matters pertaining to that member’s compensation.

No voting member of the governing board or any committee whose jurisdiction includes compensation matters and who receives compensation, directly or indirectly, from the Organization, either individually or collectively, is prohibited from providing information to any committee regarding compensation.

Article VI – Annual Statements

Each director, principal officer, and key employee shall annually sign a statement which affirms such person:

Has received a copy of the conflict of interest policy;

Has read and understands the policy;

Has agreed to comply with the policy;

Understands that the Organization is charitable;

Understands that to maintain its federal tax exemption, the Organization must engage primarily in activities which accomplish one or more of its tax-exempt purposes; and

Understands and agrees to promptly submit written notification of any material change in the information contained in this disclosure statement that occurs at any point during the year.

Article VII – Advance Determinations

Any Director, Principal Officer, or Key Employee who is uncertain about a possible conflict of interest in any matter may request the Chair of the Board follow the procedures outlined in Article 3.3 to determine whether a potential conflict exists.

Article VIII – Use of Outside Experts

When conducting the periodic review as provided for in Article VII, the Organization may, but need not, use outside advisors. If outside experts are used, their use shall not relieve the governing board of its responsibility for ensuring periodic reviews are conducted.

Article IX – Governance and Review

The Board of Directors reviewed and adopted this policy on December 8, 2025. Each year, all Board members will review and sign this policy to reaffirm compliance. New Board members will be introduced to these protocols during onboarding.

Annual Affirmation and Disclosure Statement

Pursuant to the RARE Foundation (formerly known as EveryLife Foundation for Rare Diseases and herein referred to as the “Organization”) Conflict of Interest Policy (the “Policy), I acknowledge, attest, and represent the following:

I have received and read a copy of the Policy.

I understand and agree to comply with the Policy.

I understand that the Organization is charitable, and in order to maintain its federal tax exemption, it must engage primarily in activities which accomplish one or more of its tax-exempt purposes.

Reported below, or by attached list, are:

All financial and non-financial interests that could give rise to a conflict, such as transactions between the Organization and me, or the Organization and a family member.

My affiliations with any organization with which the Organization may have a financial relationship or non-financial interest.

Family members who are affiliated with any organization with which the Organization may have a financial relationship.

Any personal, familial, or professional relationships that may raise an actual or perceived conflict of interest, even if no direct financial transaction exists.