The RARE Foundation (formerly known as EveryLife Foundation for Rare Diseases) is committed to facilitating open and honest communications relevant to its governance, finances, and compliance with all applicable laws and regulations.
It is important that the RARE Foundation be apprised about unlawful or improper behavior including, but not limited to, any of the following conduct:
- theft;
- financial reporting that is intentionally misleading;
- improper or undocumented financial transactions;
- improper destruction of records;
- improper use of assets;
- violations of the NKF’s conflict-of-interest policy; and
- any other improper occurrence regarding cash, financial procedures, or reporting.
We request the assistance of every employee who has a reasonable belief or suspicion about any improper transaction.
The Foundation values this input, and each employee should feel free to raise issues of concern, in good faith, without fear of retaliation. Employees will not be disciplined, demoted, lose their jobs, or be retaliated against for asking questions or voicing concerns about conduct of this sort.
At the same time, the Foundation expects all employees to take this policy seriously, to use it in good faith, and to use it when necessary and in a judicious manner. Reports that are not made in good faith, or otherwise are intended to harass or annoy an employee, may result in disciplinary action, including termination.
Making a Report
We encourage any employee who has a concern regarding an action of the Foundation’s governance, finances, or compliance with all applicable laws and regulations to raise the concern with a supervisor, the Chief Operating Officer, or the Chief Executive Officer.
If for any reason the employee does not believe these channels of communication are adequate, the concern should be reported immediately to the chair of the Audit Committee. Anonymous reports will be accepted, and all reports will be handled on a confidential basis. The contact information for the chair of the Audit Committee appears below.
Mark the envelope: “TO BE OPENED BY ADDRESSEE ONLY. PERSONAL AND CONFIDENTIAL.”
The chair of the Audit Committee will coordinate the investigation and the Foundation will take appropriate action as it deems justifiable by the circumstances.
This policy, and contact information for the Chief Operating Officer, are posted on the Foundation’s external website. The policy is also included in the personnel manual and communicated to all new staff as part of their orientation.
After the selection of the chair of the Audit Committee, the personal phone number and email address for the chair will be provided below and shared with staff.
CONTACT INFORMATION:
Trova O’Heffernan
Toheffernan@rareadvocates.org
1012 14th Street NW, Suite 500
Washington, DC 20005
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
