Privacy Policy

The Rett Syndrome Research Trust has developed the following Donor Privacy Policy to
ensure that the privacy of its donors are respected.

How we use that information

The Trust will never publish, sell, trade, rent or share names (unless released for
publication), e-mail or mail addresses, or telephone numbers of our donors. The Trust
will use contact information of donors for these purposes only:

  • Distribute receipts for donations
  • Thank donors for their donation
  • Inform donors about upcoming fundraising and other activities
  • Internal analysis and record keeping
  • Reporting to relevant U.S. and State agencies (these reports are not for public inspection)

Donors have the option to have their name publicly associated with their donation unless they explicitly asks to remain anonymous.

Financial information

All access to donor financial information is strictly limited to staff or volunteers who need to process those data. No such data are given to any person, organization or group who does not need to access those data.

The Trust only uses online payment processing services with world class security and strong reputations. The Trust does not store, nor does it have access to, your credit card information, bank account numbers, or other account data sent to those processing services.

Contact us

If you have questions about this Donor Privacy Policy or if you wish to be removed from our e-mail/postal contact lists, then please contact us.

Donor Bill of Rights

The Trust subscribes to the Donor Bill of Rights.

Philanthropy is based on voluntary action for the common good. It is a tradition of giving and sharing that is primary to the quality of life. To assure that philanthropy merits the respect and trust of the general public, and that donors and prospective donors can have full confidence in the not-for-profit organizations and causes they are asked to support, we declare that all donors have these rights:

  1. To be informed of the organization’s mission, of the way the organization intends to use donated resources, and of its capacity to use donations effectively for their intended purposes.
  2. To be informed of the identity of those serving on the organization’s governing board, and to expect the board to exercise prudent judgment in its stewardship responsibilities.
  3. To have access to the organization’s most recent financial statements.
  4. To be assured their gifts will be used for the purposes for which they were given.
  5. To receive appropriate acknowledgment and recognition.
  6. To be assured that information about their donations is handled with respect and with confidentiality to the extent provided by law.
  7. To expect that all relationships with individuals representing organizations of interest to the donor will be professional in nature.
  8. To be informed whether those seeking donations are volunteers, employees of the organization or hired solicitors.
  9. To have the opportunity for their names to be deleted from mailing lists that an organization may intend to share.
  10. To feel free to ask questions when making a donation and to receive prompt, truthful and forthright answers.

The text of this statement in its entirety was developed by the American Association of Fund-Raising Counsel (AAFRC), Association for Healthcare Philanthropy (AHP), Council for Advancement and Support of Education (CASE), and National Society of Fund Raising Executives (NSFRE).

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