Statement of Values and Code of Ethics for the National Fabry Disease Foundation¹

Introduction

The National Fabry Disease Foundation (NFDF) intends to adhere to the highest ethical standards because public trust in our performance is the bedrock of our legitimacy. Our donors and volunteers support the NFDF because they trust the NFDF to carry out our mission, to be good stewards of our resources, and to uphold rigorous standards of conduct.

We must earn this trust every day and in every possible way. Because the foundation of our organization is people, it is up to our board members, executive leaders, staff, and volunteers to demonstrate our ongoing commitment to our core values of integrity, honesty, fairness, openness, respect, and responsibility.

Adherence to the law is the NFDF's minimum standard of expected behavior. We must do more, however, than simply obey the law. We must embrace the spirit of the law, often going beyond legal requirements and making sure that what we do is matched by what the public understands about what we do. Responsiveness to public concerns must be integral to our behavior.

Statement of Values

Any code of ethics is built on a foundation of widely shared values. The values of the NFDF include:

Faithful to our commitment to achieve the NFDF's vision, mission and goals to improve the lives of individuals with Fabry disease.

Accountable to fulfill the NFDF’s leadership duties of Care, Loyalty and Obedience and dedicated to the pursuit of excellence and continuous improvement.

Bound by the NFDF’s obligation to act with integrity, honesty, and fairness, and to uphold the values and ethics of the organization.

Respectful of everyone's dignity and their right to make their own choices, and dedicated to safeguarding personal and medical information entrusted to the NFDF.

Yielding without hesitation to the greater needs of the Fabry disease community and the public good over self.

These values lead directly to the Code of Ethics for the NFDF that follows and will be used in developing our policies and informing our practices.

The Code of Ethics of the National Fabry Disease Foundation

I. Personal and Professional Integrity

All staff, board members and volunteers of the organization act with honesty, integrity and openness in all their dealings as representatives of the organization. The organization promotes a working environment that values respect, fairness and integrity.

II. Mission

The NFDF has clearly a stated vision, mission and objectives, approved by the board of directors, in pursuit of the public good. All of our programs support that mission and all who work for or on behalf of the organization must understand and are loyal to that mission and purpose. Our mission must be and is responsive to the Fabry disease community and the overall NFDF constituency, and must be of value to the society at large.

III. Governance

The NFDF has an active governing body (the Board of Directors) that is responsible for setting the vision, mission and strategic direction of the organization and for oversight of the finances, operations, and policies of the organization. The governing body:

Ensures that its board members have the requisite skills and experience to carry out their duties and that all members understand and fulfill their governance duties acting for the benefit of the organization 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 through disclosure, recusal or other means; and is responsible for the accession, release, and regular review of the performance of the chief executive officer (CEO), and other specific employees deemed appropriate, and ensures that the compensation of the chief executive officer and other such employees is reasonable and appropriate;

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

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

Ensures that the organization promotes working relationships with board members, staff, volunteers, and program beneficiaries that are based on mutual respect, fairness and openness;

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

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

Ensures that the resources of the organization are responsibly and prudently managed; and,

Ensures that the organization has the capacity to carry out its programs effectively.

IV. Legal Compliance

The NFDF must be knowledgeable of and complies with all laws and regulations.

V. Responsible Stewardship

The NFDF manages our funds responsibly and prudently. This includes the following considerations:

The NFDF spends a reasonable percentage of its annual budget on programs in pursuance of its mission;

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

The NFDF compensates staff, and any others who may receive compensation, reasonably and appropriately;

The NFDF must have reasonable fundraising costs, recognizing the variety of factors that affect fundraising costs;

The NFDF does not accumulate operating funds excessively;

If the NFDF receives endowment funds, endowments (both foundations and public charities) prudently draw from endowment funds consistent with donor intent to the maximum extent possible and to support the public purpose of the organization;

The NFDF ensures that all spending practices and policies are fair, reasonable and appropriate to fulfill the mission of the NFDF; and,

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

VI. Openness and Disclosure

The NFDF provides all required information to the public, the media, and all stakeholders while maintaining confidentiality and is responsive in a timely manner to reasonable requests for information. All information about the NFDF will fully and honestly reflect the policies and practices of the organization. Basic informational data about the NFDF, such as the Form 990 and IRS exemption application will be available to the public. All solicitation materials accurately represent the NFDF's policies and practices and will reflect the dignity of program beneficiaries. All financial, organizational, and program reports will be complete and accurate in all material respects.

VII. Program Evaluation

The NFDF regularly reviews program effectiveness and has mechanisms to incorporate lessons learned into future programs. The organization is committed to improving program and organizational effectiveness and develops mechanisms to promote learning from its activities and the field. The NFDF is responsive to changes in its field of activity and is responsive to the needs of its constituencies.

VIII. Inclusiveness and Diversity

The NFDF has a policy of promoting inclusiveness and its staff, board and volunteers reflect diversity in order to enrich its programmatic effectiveness. The NFDF takes meaningful steps to promote inclusiveness in its hiring, retention, promotion, board recruitment and constituencies served.

IX. Fundraising

The NFDF's fundraising efforts to raise funds from the public or from donor institutions are truthful in their solicitation materials. The NFDF respects the privacy concerns of individual donors, and respects the intent of donations made to the maximum extent possible. The NFDF will disclose important and relevant information to potential donors.

In raising funds from the public, the NFDF will respect the rights of donors, as follows:

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

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

To have access to the NFDF's most recent IRS information returns (Form 990);

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 and the donor's desire;

To expect that all relationships with individuals representing the NFDF will be professional in nature;

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

To have the opportunity for their names to be deleted from mailing lists or publications including the NFDF website that the NFDF may intend to share; and,

To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.2

X. Grantmaker Guidelines

Organizations that are grantmakers or potential grantmakers such as the NFDF, if the organization engages in grantmaking, have particular responsibilities in carrying out their missions.3 These include the following:

The NFDF will have constructive relations with grantseekers based on mutual respect and shared goals;

The NFDF will communicate clearly and on a timely basis with potential grantees;

The NFDF will treat grantseekers and grantees fairly and with respect;

The NFDF will respect the expertise of grantseekers in their fields of knowledge;

The NFDF will seek to understand and respect the organizational capacity and needs of grantseeking organizations; and,

The NFDF will respect the integrity of the mission of grantseeking organizations.

Process and Afterword

The Statement of Values and Code of Ethics for the National Fabry Disease Foundation were approved by the NFDF Board of Directors at their first meeting in April 22, 2006. This statement is distributed to all Directors, Officers, employees and volunteers and is posted on the NFDF website accessible by all donors and other interested parties.

In addition, while the NFDF board has given its approval to this document, the Board will continue to review and revise it, as necessary. This code of ethics is, by necessity, general in outlining broad ethical principles. It is not a detailed set of specific recommended practices.

¹ This document was modeled after the Statement of Values and Code of Ethics for Nonprofit and Philanthropic Organizations prepared by the organization INDEPENDENT SECTOR. As published in the Independent Sector publication, much of the spirit, and some of the language, in this Code are taken from Obedience to the Unenforceable, first published by INDEPENDENT SECTOR in 1991 and re-released in 2002. Other helpful sources include the Code of Ethics for Museums by the American Association of Museums, the Code of Ethics of the Charles Stewart Mott Foundation, the Code of Ethics of the United Way of America, and the work of the Institute for Global Ethics. For a comprehensive listing of codes and standards for nonprofit and philanthropic organizations, see the INDEPENDENT SECTOR website by clicking here.

² These ten points (slightly revised) are taken from A Donor Bill of Rights, developed by the American Association of Fund Raising Counsel, the Association for Healthcare Philanthropy, the Council for the Advancement and Support of Education, and the Association of Fundraising Professionals, and endorsed by INDEPENDENT SECTOR.

³ The Council on Foundations has a guide for grantmakers entitled Principles and Practices for Effective Grantmaking available on their website at http://www.cof.org/Content/General/Display.cfm?contentID=156&.