Code of Ethics

Learn more about the Cystic Fibrosis Foundation’s Code of Ethics.

7 min read

Personal and Professional Integrity

All trustees, advisors, staff, and volunteers of the Cystic Fibrosis Foundation (“Foundation”) act with honesty, integrity, and openness in their dealings as representatives of the Foundation and are expected to comply with this Code of Ethics as applicable to their role with the Foundation. The Foundation promotes a working environment that values respect, fairness, and integrity.

Mission

The Foundation has a clearly stated mission and purpose, approved by the board of trustees, in pursuit of the public good. All of its programs support that mission to cure cystic fibrosis and to provide all people with CF the opportunity to lead long, fulfilling lives by funding research and drug development, partnering with the CF community, and advancing high-quality, specialized care. All who work for or on behalf of the Foundation understand and are loyal to that mission and purpose. The mission is responsive to the constituency and communities served by the Foundation and of value to the society at large.

Governance

The Foundation has a board of trustees that is responsible for setting the mission and strategic direction of the Foundation and for oversight of the finances, operations, and policies of the Foundation. The board:

Ensures that its trustees have the requisite skills and experience to carry out their duties and that all trustees understand and fulfill their governance duties by acting for the benefit of the Foundation and its public purpose;

Has a conflict of interest policy that ensures that any conflicts of interest or the appearance thereof are avoided or appropriately managed;

Is responsible for the hiring, terminating, and regular review of the performance of the chief executive officer (CEO), and ensures that the compensation of the CEO is reasonable and appropriate;

Ensures that the CEO and appropriate staff provide the board with timely and comprehensive information so that the board can effectively carry out its duties;

Ensures that the Foundation conducts all transactions and dealings with integrity and honesty;

Ensures that the Foundation promotes working relationships with trustees, advisors, staff, volunteers, program beneficiaries, and other stakeholders that are based on mutual respect, fairness, and openness;

Ensures that the Foundation is fair and inclusive in its hiring and promotion policies for staff, and practices for board and volunteer positions;

Ensures that the policies of the Foundation are in writing, clearly articulated, and officially adopted;

Ensures that the resources of the Foundation are responsibly and prudently managed; and Ensures that the Foundation has the capacity to carry out its programs effectively.

Legal Compliance

The Foundation is knowledgeable of and complies with all applicable laws, rules, and regulations.

Responsible Stewardship

The Foundation manages its funds responsibly and prudently. The Foundation:

Spends a responsible percentage of its annual budget on programs in pursuit of its mission;

Spends an adequate amount on administrative expenses to ensure effective accounting systems, internal controls, competent staff, and other expenditures critical to professional management;

Compensates staff, and any others who may receive compensation, reasonably and appropriately;

Has reasonable fundraising costs, recognizing the variety of factors that affect fundraising costs;

Prudently draws from reserve funds consistent with donor intent and the public purpose of the organization;

Ensures that all spending practices and policies are fair, reasonable, and appropriate to fulfill the mission of the Foundation; and

Ensures that all financial reports are factually accurate and complete in all material respects.

Openness and Disclosure

The Foundation provides comprehensive and timely information to the public, the media, and stakeholders and is responsive in a timely manner to reasonable requests for information. All information about the Foundation fully and honestly reflects its policies and practices. Basic informational data about the Foundation, such as the Form 990 and audited financial statements are posted on the Foundation's website or otherwise available to the public. All solicitation materials accurately represent the Foundation's policies, practices, and programs. All financial, organizational, and program reports are complete and accurate in all material respects.

Program Evaluation

The Foundation regularly reviews program effectiveness and has mechanisms to incorporate lessons learned into future programs. The Foundation is committed to improving its programs, including, without limitation, research, care, and education, and to continually improving organizational effectiveness. The Foundation is responsive to changes in its field of activity and is responsive to the needs of its constituencies.

Inclusiveness and Diversity

The Foundation is committed to inclusiveness and diversity in its trustees, advisors, employees, and volunteers. The Foundation takes meaningful steps to promote inclusiveness in its hiring, retention, promotion, board recruitment, and engaging its constituencies. The Foundation complies with federal and state equal employment opportunity laws and maintains a policy of promoting diversity.

Fundraising

When raising funds, the Foundation is truthful in its solicitation materials. The Foundation respects the privacy concerns of individual donors, expends funds consistent with donor intent, and discloses important and relevant information to potential donors.

In raising funds from the public, the Foundation respects the rights of donors:

To be informed of the mission of the Foundation, the way the resources will be used, and its capacity to use donations effectively for their intended purposes;

To be informed of the identity of those serving on the Foundation's board of trustees and to expect the board to exercise prudent judgment in its stewardship responsibilities;

To have access to the Foundation's most recent annual report and audited financial statements; To be assured their gifts will be used for the purposes for which they were given;

To receive appropriate acknowledgement and recognition;

To be assured that information about their donations is handled with respect and with confidentiality to the extent provided by the law;

To expect professional and respectful conduct from the Foundation's staff;

To be informed whether those seeking donations are volunteers, employees of the Foundation, or hired solicitors;

To have the opportunity for their names to be deleted from Foundation mailing lists; and,

To feel free to ask questions when making a donation and to receive prompt, truthful, and forthright answers from the Foundation.

Granting Guidelines

The Foundation offers competitive awards and grants to members of the research and medical community who help advance cystic fibrosis research and care. The Foundation offers grants and awards for cystic fibrosis research, care, professional development and training. The Foundation strives for constructive relationships with grantseekers based on mutual respect and shared objectives, including clear communication, compliance with applicable rights of privacy and laws, and in the spirit of the highest integrity.

Relationship With Industry

To accomplish its mission, the Foundation engages with biotechnology and pharmaceutical companies and other healthcare professionals that are advancing cystic fibrosis-related research, therapies and devices (“Industry”). In addition to ensuring the Foundation complies with applicable laws and regulations, the Foundation has policies that govern its interactions with Industry to ensure its commitment to its community and its high ethical standards remain uncompromised.

The Foundation regularly evaluates potential and ongoing interactions with Industry to ensure they comply with regulatory guidelines as well as the Foundation's internal standards for integrity and ethical behavior.

Revised Nov. 16, 2020

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