Donor privacy and confidentiality policy

Your trust and confidence are important to us. The purpose of this policy is to state the position of the PKD Foundation on donor confidentiality and donor anonymity and will guide the actions of the Board of Trustees, the CEO and staff and committee members who may serve the Foundation, regarding the rights of donors and potential donors to confidentiality regarding their transactions with the Foundation.

The PKD Foundation recognizes that the operation of the Foundation requires the maintenance and management of extensive donor and prospect records. Donor records often contain sensitive information that has been shared with or developed by Foundation staff on a confidential basis. “Records” means all files, including electronic data, containing information on donors or prospective donors to the Foundation.

Information about donors and donations is handled with respect and confidentiality. Employees and volunteers of the PKD Foundation are not permitted to use this information for any purpose other than to carry out the services they are performing for the benefit of the PKD Foundation.

Policies

Confidentiality of records

The CEO shall be responsible for maintaining the confidentiality of donor and prospect records and will ensure that all staff have clear direction regarding the confidentiality of records through the establishment of appropriate operating procedures. He/she may, in his/her discretion, make all or part of any record available to staff members or volunteers if essential to them in executing their responsibilities. Disclosure decisions will honor the wishes of donors related to disclosure unless a larger legal issue is related. The PKD Foundation will not sell, share, or trade your personal information for third party fundraising or marketing purposes. The PKD Foundation does not sell its mailing lists.

To carry out its responsibilities, the Board of Trustees or committee members may need to review donor/prospect records. They shall respect the Foundation’s significant interest in protecting the sensitive nature of those records and shall maintain these policies for donor confidentiality.

The Foundation’s auditors are authorized to review donor and prospect records as required for the purposes for which they are engaged. Gift agreements are considered “strictly confidential information” and are not public documents. Particulars of a gift agreement will not be shared with the general public unless the donor has granted permission to do this.

Publication of donor names

The names of donors may be listed in the Foundation’s annual report, on the website and/or in similar public relations communications. Exceptions will be made for any donor who specifically requests anonymity.

The Foundation will not publish the specific amount of any donor’s gift without the permission of the donor.

Donors making gifts to the Foundation by bequest or other testamentary device are deemed to have granted such permission, unless otherwise noted.

Honor/memorial gifts

The names of donors of memorial or honor gifts may be released to the honoree, next of kin or individual(s) designated by the immediate family, unless otherwise specified by the donor. Gift amounts are not to be released without express consent of the donor.

Anonymous gifts

The CEO is authorized to accept anonymous gifts to the Foundation. In the event the CEO is uncertain about the desirability of accepting an anonymous gift, he/she shall consult with the Executive Committee. The CEO shall disclose to the Executive Committee, upon a request by a majority of the Executive Committee, the names of any anonymous donors.

Kinds of information

The Foundation defines “personal information” as information that can be used to distinguish, identify or contact a specific individual. It does not include publicly available information such as business contact information, names, addresses and telephone numbers as published in public sources, such as telephone directories. Credit card information is handled by a secure third party host and used only to process payment initiated by a person contacting the PKD Foundation. This information is not stored by the PKD Foundation.

How we use it

The Foundation collects, uses and discloses personal information concerning our donors for the following reasons:

  • To establish a relationship and communicate with donors
  • To understand who our donors are and how we may improve our services to meet their preferences and expectations
  • To process a donation (e.g. a credit card transaction)
  • To issue a tax receipt
  • To recognize contributions
  • To meet requirements imposed by law

How we protect your information

To learn more about how the Foundation protects your information, please refer to the privacy policy.

If you have questions about this policy, please contact the Foundation’s Chief Development Officer at donate@pkdcure.org or by calling 800.753.2873 (PKD CURE).