AA&MDSIF hopes that this statement will demonstrate -- in clear, easy-to-understand terms -- AA&MDSIF's ongoing commitment to the core values of integrity, honesty, dignity, fairness, openness, respect, and responsibility.
Statement of values
- accountability and commitment to the good of patients, caregivers and families dealing with bone marrow failure diseases
- respect for the worth and dignity of all individuals
- dedication to inclusiveness and diversity
- commitment to transparency, integrity, and honesty in all dealings
- responsible stewardship of resources
Code of ethics
I. Personal and Professional Integrity
All AA&MDSIF Board members, staff, and volunteers will act with honesty and openness in all of their dealings as representatives of AA&MDSIF. AA&MDSIF operates in a working environment that values the highest ethical values and integrity.
AA&MDSIF is dedicated to:
- serving as the resource of choice for patient assistance, advocacy, and support
- providing educational materials and medical information
- promoting public awareness and understanding of bone marrow diseases
- funding research to find treatments and cures for aplastic anemia (AA), myelodysplastic syndromes (MDS), paroxsmal nocturnal hemoglobinuria (PNH) and related bone marrow diseases
All AA&MDSIF programs are designed to support this mission, and all individuals who work for, or on behalf of, AA&MDSIF must understand and remain loyal to this mission.
AA&MDSIF is governed by a volunteer Board of Directors responsible for setting the mission and strategic direction of AA&MDSIF and providing oversight of the finances, operations, and policies of the organization. The Board of Directors endeavors to ensure that:
- the Board of Directors will be comprised of patients, caregivers, and family members of patients
- no individual shall be nominated for, or elected to, the AA&MDSIF Board of Directors because of his or her affiliation with any private interests, including but not limited to, pharmaceutical companies
- private interests, including pharmaceutical companies, will have no influence on the governance of the AA&MDSIF
- the members of the AA&MDSIF Board of Directors are committed to furthering the best interests of the AA&MDSIFand those it serves
- each year, all Board members sign a Disclosure Statement and Acknowledgment identifying any organizations or companies with which they are involved which might present an actual or apparent conflict of interest with their service as fiduciaries of AA&MDSIF and have agreed to disclose any such actual or apparent conflicts to the Board and to recuse themselves from any vote or discussion in such circumstances unless otherwise directed by the Board
- all transactions and dealings will be conducted with integrity and honesty
- no staff or Board member of AA&MDSIF is employed by, or serves as a volunteer or consultant in any capacity with, any pharmaceutical company or any other for-profit corporation that is likely to receive a direct benefit from relationships with AA&MDSIF or the patients that it serves
- the Executive Director and staff will provide the Board with timely and comprehensive information so that the Board can effectively carry out its governance duties
- AA&MDSIF will promote working relationships among the Board, staff, volunteers, and AA&MDSIF beneficiaries based on mutual respect, fairness, and openness
- AA&MDSIF's policies will be clearly written, officially adopted, and adhered to
- the resources of AA&MDSIF will be used responsibly and prudently so that AA&MDSIF has the capacity to carry out its programs effectively
- a distinguished and internationally-respected Medical Advisory Board will advise the Board of Directors on decisions about grants for research and will review medical information before publication by AA&MDSIF
IV. Legal Compliance
The Board members, staff, and volunteers of AA&MDSIF are committed to observing all applicable federal, state, and local laws, and international conventions.
V. Responsible Stewardship
The Board and staff of AA&MDSIF are committed to managing AA&MDSIF's funds responsibly and prudently by:
- designing a plan and budget that devotes as much as possible to programs that serve its mission
- ensuring that all spending practices and policies are fair, reasonable, and appropriate to fulfilling the mission of AA&MDSIF
- never allowing any donor or donation to compromise the ethical standards of AA&MDSIF or cause it to deviate from its core mission
- never advertising, marketing, or promoting a commercial product or service offered by any of its donors
- preparing regular financial reports that are factually accurate and complete in all material aspects
- having annual financial audits conducted by an outside and professionally recognized accounting firm ensuring that financial operations adhere to IRS regulations and general accounting principles
- ensuring that basic financial documents are available to the public
VI. Openness and Disclosure
AA&MDSIF's Board and staff are committed to providing comprehensive information to the public, the media, and all stakeholders and to being responsive in a timely manner to all reasonable requests for information. The Board and staff shall endeavor to ensure that all financial, organizational, and program reports will be complete and accurate.
AA&MDSIF's Board and staff are committed to being truthful in all fundraising materials, respecting the privacy concerns of individual donors, expending funds consistent with donor intent, and disclosing important and relevant information to potential donors. AA&MDSIF's Board and staff respect the right of donors to:
- be informed of the organization's mission, how resources are used, and the ability of AA&MDSIF to use donations effectively for intended purposes
- have access to the organization's most recent financial reports
- be assured that gifts will be used for the purposes for which they were given
- receive appropriate acknowledgement and recognition
- be assured that information about their donations is handled with respect and with confidentiality as required by law
- be informed whether individuals seeking donations are volunteers, employees, or hired solicitors
- receive prompt, truthful and forthright answers to any questions about donations
Some of the unrestricted educational grants that AA&MDSIF receives are from pharmaceutical companies. Such grants are used to support the mission of AA&MDSIF. While AA&MDSIF accepts such grants, AA&MDSIF does not agree to provide grant donors with any special access to AA&MDSIF Board members, staff, Medical Advisory Board members, volunteers or other officials. These grants do not entitle the donor to any influence on organizational or program policies or on the awarding of research grants. These grants do not influence the educational and informational materials distributed by AA&MDSIF. AA&MDSIF will not promote or endorse any drug or treatment on the basis of the receipt of a grant or donation from a pharmaceutical company or any other private entity.
AA&MDSIF keeps private and confidential all information that it collects or receives about patients and family members. Personal patient information will only be used in the aggregate for demographic purposes. Except as required by law, AA&MDSIF will never provide information about its donors to any other group or persons, nor will it advertise, market, or promote a commercial product or service offered by any donor.
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