Privacy Policy

This is the web site of Alliance to Cure Cavernous Malformation. Access is anonymous and free. The privacy of visitors is important to us.

Information Sharing

We do not share information that may identify a visitor without their prior permission. We use your information only for its intended business purpose. We do not sell or trade your information to other organizations or individuals.

Funding and Advertising

Our web site is funded by individual donations at this time. We will accept corporate underwriting and foundation grants should they become available. We will never share user information with our funding sources. We have no direct advertising on our site at this time. However, we use third-party services that may have advertising. We can not control the content of their advertisements.


Some of our third-party providers, including Constant Contact, Classy, and Invitae may drop cookies on your computer to save your identifying information. 

Information Protection

Alliance to Cure Cavernous Malformation takes every possible measure to ensure that your information is not compromised in any way. Our privacy promise extends online to our Internet website, too. Online information is transmitted via a secure server using encryption technology.

If you choose to send us an email, we may retain the contents of your email message, our reply, and your email address as part of our ongoing customer service efforts. We reserve the right to contact you after you have contacted us and may send future emails and/or surveys to you about Alliance to Cure Cavernous Malformation. You may notify us via email if you wish to discontinue electronic communication.

Access Logs

We do not maintain access logs for the pages on our site. We have a simple hit counter on several pages that does not store IP information.

Mailing List and Member Database

The information you submitted to join our informational online mailing list is stored by Constant Contact and is not shared with any third party. We keep your personal information as accurate, complete, and up-to-date as is required to fulfill the purpose(s) for which you provided us with your personal information. Upon request in writing, we will remove your personal information from our databases, except where legislation or regulation requires our retention of it (for example, charitable giving history tied to income tax receipts.)

Patient Registry

Our Alliance to Cure Cavernous Malformation International Patient Registry data is stored by Invitae and is not shared with any third party. Further information about Patient Registry privacy is available in the Patient Registry Privacy Policy.

DNA/Tissue Bank and Clinical Database

The Alliance to Cure Cavernous Malformation DNA/Tissue Bank and Clinical Database is a research project that is conducted with the approval of the Advarra Investigational Review Board. Additional privacy information for this project can be found at and in the Informed Consent document provided to potential participants.


If you have any questions about our website or our Privacy Policy, please contact us at or write to us at Alliance to Cure Cavernous Malformation, 977 Seminole Trail #367, Charlottesville, VA 22901.


Page last updated 12.9.2020

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