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Effective Date: July 12, 2026

The PNH & Aplastic Anemia Family Alliance (“PNHAA,” “we,” “our,” or “us”) is committed to conducting all fundraising activities with honesty, integrity, transparency, and accountability. We recognize that our donors place their trust in us, and we are committed to honoring that trust through ethical fundraising practices that advance our mission of supporting individuals and families affected by Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anemia.

This Fundraising Ethics Policy establishes the standards that govern how PNHAA solicits, accepts, manages, and reports charitable contributions.

Purpose

The purpose of this policy is to ensure that all fundraising activities:

  • Support PNHAA’s charitable mission.
  • Protect the interests of donors.
  • Maintain public confidence.
  • Comply with applicable laws and regulations.
  • Promote ethical stewardship of charitable resources.

Our Ethical Principles

Every fundraising activity conducted by PNHAA shall be guided by the following principles:

  • Integrity
  • Transparency
  • Honesty
  • Accountability
  • Respect
  • Stewardship
  • Compassion
  • Mission First

Honest Communications

PNHAA is committed to providing truthful, accurate, and complete information regarding our mission, programs, financial needs, and organizational activities.

We will never knowingly:

  • Misrepresent our mission.
  • Exaggerate the impact of donations.
  • Mislead donors regarding how contributions will be used.
  • Use deceptive fundraising practices.
  • Create false urgency or misleading appeals.

Mission-Driven Fundraising

All fundraising activities must directly support the charitable mission of PNHAA.

Fundraising initiatives should reflect our commitment to serving patients, caregivers, and families with compassion, integrity, and respect.

Respect for Donors

PNHAA values every donor regardless of contribution amount.

We will:

  • Treat every donor with respect.
  • Honor donor preferences.
  • Respect requests for anonymity.
  • Provide accurate acknowledgments.
  • Respond professionally to donor inquiries.

No Undue Pressure

PNHAA will never pressure, intimidate, or harass individuals into making charitable contributions.

Donors are free to:

  • Decline to donate.
  • End recurring donations.
  • Request removal from fundraising communications.
  • Ask questions before contributing.

Transparency

PNHAA is committed to transparency regarding:

  • Our mission.
  • Programs and services.
  • Use of charitable funds.
  • Financial reporting.
  • Organizational leadership.
  • Governance practices.

Whenever reasonably possible, donors should have access to information that helps them make informed charitable giving decisions.

Stewardship of Donations

PNHAA recognizes that every donation represents the trust and generosity of our supporters.

We are committed to using charitable contributions responsibly to:

  • Advance our mission.
  • Provide patient support.
  • Deliver educational resources.
  • Administer financial assistance programs.
  • Support responsible organizational operations.

Administrative Expenses

PNHAA believes responsible administrative expenses are essential to fulfilling our mission.

Administrative costs may include:

  • Technology.
  • Insurance.
  • Professional services.
  • Compliance.
  • Website maintenance.
  • Program administration.
  • Staff compensation.
  • Fundraising costs.

We will communicate honestly regarding how donations support both programs and the responsible operation of our organization.

Restricted Donations

When PNHAA accepts donations designated for a specific purpose, we will make reasonable efforts to use those funds in accordance with the donor’s intent.

If circumstances make the original purpose impractical or impossible, PNHAA may redirect funds to a closely related charitable purpose consistent with applicable law.

Corporate Partnerships

PNHAA welcomes partnerships with businesses, foundations, healthcare organizations, and community partners whose support aligns with our mission.

Corporate support shall never influence:

  • Educational content.
  • Patient navigation services.
  • Grant decisions.
  • Editorial independence.
  • Organizational governance.

Healthcare & Pharmaceutical Support

PNHAA recognizes that healthcare and pharmaceutical organizations may support patient advocacy initiatives.

Such support will never compromise:

  • Scientific accuracy.
  • Educational independence.
  • Grant eligibility decisions.
  • Patient trust.
  • Organizational integrity.

Conflicts of Interest

Individuals involved in fundraising activities must comply with PNHAA’s Conflict of Interest Policy.

Any actual or potential conflict must be disclosed promptly and managed appropriately.

Donor Privacy

PNHAA respects donor privacy.

We do not sell, rent, or trade donor information.

Donor information is handled in accordance with our Privacy Policy and applicable laws.

Anonymous Giving

Donors may request that their identity remain confidential.

PNHAA will honor reasonable requests for anonymity except where disclosure is required by law.

Fundraising Volunteers

Volunteers representing PNHAA are expected to:

  • Represent the organization honestly.
  • Respect donor privacy.
  • Avoid misleading statements.
  • Follow organizational policies.
  • Protect confidential information.

Compliance with Laws

PNHAA will conduct fundraising activities in compliance with applicable federal, state, and local laws governing charitable organizations and charitable solicitations.

Reporting Concerns

Individuals who believe fundraising activities are inconsistent with this policy are encouraged to report their concerns to PNHAA.

Concerns will be reviewed promptly and handled appropriately.

PNHAA prohibits retaliation against individuals who report concerns in good faith.

Policy Review

This policy will be reviewed periodically by the Board of Directors to ensure continued compliance with applicable laws, nonprofit governance standards, and organizational best practices.

Changes to This Policy

PNHAA reserves the right to modify this Fundraising Ethics Policy at any time.

Revisions become effective upon publication on this website.

Contact Us

If you have questions regarding this Fundraising Ethics Policy, please contact us.

PNH & Aplastic Anemia Family Alliance (PNHAA)
Website: https://pnhaa.org
Email: fundraising@pnhaa.org

Our Commitment

Every donation to PNHAA represents a belief in our mission and a commitment to helping families affected by PNH and aplastic anemia. We pledge to honor that trust through ethical fundraising, responsible stewardship, transparent communication, and unwavering dedication to the patients and families we serve. Our fundraising efforts will always be guided by integrity, compassion, and the principle that every charitable contribution should make a meaningful difference.