ACKC Privacy Policy

Action to Cure Kidney Cancer’s Privacy Statement:

Individuals who are registered with Action to Cure Kidney Cancer are entitled to expect that their information will be held in strictest confidence.

No information about specific individuals is ever shared with, sold to, rented to, or made available in any way to any outside party.

• Internal access to such information is handled on a strict need-to-know basis under a signed confidentiality agreement with the ACKC Board of Directors.

Privacy Principles

Action to Cure Kidney Cancer (ACKC) is committed to maintaining the accuracy, confidentiality, and security of your personally identifiable information (“Personal Information”). As part of this commitment, the following ten Privacy Principles govern our actions as they relate to the collection, use and disclosure of Personal Information.

Principle 1 – Accountability

Principle 2 – Identifying Purposes

Principle 3 – Consent

Principle 4 – Limiting Collection

Principle 5 – Limiting Use, Disclosure and Retention

Principle 6 – Accuracy

Principle 7 – Safeguarding Customer Information

Principle 8 – Openness

Principle 9 – Customer Access

Principle 10 – Handling Customer Complaints and Suggestions

Principle 1 – Accountability

ACKC is responsible for maintaining and protecting the Personal Information under its control. ACKC has designated an individual or individuals who is/are accountable for compliance with the ten Privacy Principles.

Principle 2 – Identifying Purposes

The purposes for which Personal Information is collected will be identified before or at the time the information is collected.

Principle 3 – Consent

Knowledge and consent are required for the collection, use or disclosure of Personal Information except where required or permitted by law.

Principle 4 – Limiting Collection

The Personal Information collected will be limited to those details necessary for the purposes identified by ACKC.

Principle 5 – Limiting Use, Disclosure and Retention

Personal Information may only be used or disclosed for the purpose for which it was collected unless you have otherwise consented, or when it is required or permitted by law. Personal information will only be retained for the period of time required to fulfill the purpose for which it was collected or as required by law.

Principle 6 – Accuracy

Personal Information will be maintained in as accurate, complete and up-to-date form as is necessary to fulfill the purposes for which it is to be used.

Principle 7 – Safeguarding Constituent Information

Personal Information will be protected by security safeguards that are appropriate to the sensitivity level of the information.

Principle 8 – Openness

ACKC will make information available to our constituents concerning the policies and practices that apply to the management of their Personal Information.

Principle 9 – Constituent Access

Upon request, a constituent shall be informed of the existence, use and disclosure of their Personal Information, and shall be given access to it. Constituents may verify the accuracy and completeness of their Personal Information, and may request that it be amended, if appropriate.

Principle 10 – Handling Constituent Complaints and Suggestions

Constituents may direct any questions or enquiries with respect to the privacy principles outlined above or about our practices by contacting:

If you have questions or concerns regarding our organization’s privacy policy and practices, you should first contact ACKC directly.

What Information is Collected?

At ACKC, we collect, use and disclose Personal Information to provide you with the services you have requested. Providing us with your Personal Information is always your choice.

The types of Personal Information we may ask for depends on the nature of the services we provide you and typically includes your name, address, telephone number and e-mail address.

When you visit the ACKC website, Personal Information is not collected unless you choose to provide it voluntarily. You are welcome to browse the websites at any time anonymously and privately without revealing any personal information about yourself.

Types of Information We Collect

Personal Information

Most of the Personal Information we collect comes to us directly from you, and only with your consent. With your consent, we may collect Personal Information from you in person, over the telephone or by corresponding with you via the Internet.


Your provision of Personal Information to us means that: (a) you agree and consent that we may collect, use and disclose your Personal Information in accordance with this policy; and (b) you or your representatives are authorized to provide us with your Personal Information. If you do not agree with these terms, you and your representatives are requested not to provide any Personal Information to ACKC. Certain services can only be offered if you provide Personal Information to ACKC. Consequently, if you and your representatives choose not to provide us with any required Personal Information, we may not be able to offer you certain products or services.

How Your Information is Used

Personal Information

We use your Personal Information to communicate with you, effectively provide the services you have requested and safeguard your interests. We may also send you information about other products and services in which we believe you may be interested.

We only use Personal Information for the purposes that we have disclosed to you. If for any reason your information is required to fulfill a different purpose, we will obtain your consent before we proceed.

When Information May be Disclosed to Outside Parties

How We Safeguard Your Information

We use state-of-the-art technologies and maintain current security standards to ensure that your Personal Information is protected against unauthorized access, disclosure, inappropriate alteration or misuse. All safety and security measures are also appropriate to the sensitivity level of your information.

Customer Files

Electronic customer files are kept in a highly secured environment with restricted access.

Online Security

We manage our server environment appropriately and our firewall infrastructure is strictly adhered to. Our security practices are reviewed on a regular basis and we routinely employ current technologies to ensure that the confidentiality and privacy of your information is not compromised.

How You Can Protect Your Information

We do our utmost to protect and safeguard your Personal Information. We believe there are measures you should take as well. The following is a list of things you can do to protect yourself against fraud and uninvited intrusion.

Personal Information

You should not share personal information with others unless you clearly understand the purpose of their request and you know who you are dealing with.

Accessing and Amending Your Information

At ACKC, decisions are made based on the information we have. Therefore, it is important that your Personal Information is accurate and complete. As a constituent, you have the right to access, verify and amend the information that we hold about you.

Accessing Your Information

For privacy-related matters, you may verify access and verify any of your information by emailing us at

Amending Your Information

To help us keep your Personal Information up-to-date, we encourage you to amend inaccuracies and make corrections as often as necessary. Despite our efforts, errors sometimes do occur. Should you identify any incorrect or out-of-date information in your file(s), we will make the proper changes.

To Make a Change

To make a change to the personal contact information contained in your file, you may email ACKC at

In each case, you will be required to verify your identity by providing some personally identifying information.

Questions, Concerns and Complaints

If you have a question about the privacy policies stated on this site, please email us at

Before ACKC is able to provide you with any information or correct any inaccuracies, however, we may ask you to verify your identity and to provide other details to help us to respond to your request. We will endeavor to respond within an appropriate timeframe.

Updating this Privacy Policy

Any changes to our privacy policy and information handling practices will be acknowledged in this policy in a timely manner. We may add, modify or remove portions of this policy when we feel it is appropriate to do so. You may determine when this policy was last updated by referring to the modification date found at the bottom of this privacy policy.

Websites Governed by this Privacy Policy

The website that is governed by the provisions and practices stated in this privacy policy is:

Other Websites

The foregoing websites may contain links to other third party sites that are not governed by this privacy policy. Although we endeavor to only link to sites with high privacy standards, our privacy policy will no longer apply once you leave these websites. Additionally, we are not responsible for the privacy practices employed by other third party websites. Therefore, we suggest that you examine the privacy statements of those sites to learn how your information may be collected, used, shared and disclosed.

Last modified: September 9, 2010