We understand the importance of personal and medical information security. We are absolutely committed to personal privacy in medical and partnership matters, on the Internet and on paper. If you have questions or concerns about privacy-related matters, call The Sturge-Weber Foundation at (973) 895-4445.  We are prepared to discuss the personal information we collect and how that information is used at The Sturge-Weber Foundation.

Thank you for your attention,

Board of Directors
The Sturge-Weber Foundation

Advertising and Financial Support Policy

This web site is operated and maintained by The Sturge-Weber Foundation. The SWF is a 501c3 not for profit organization. Our efforts, as an educational resource and advocacy group for individuals affected by port wine stain related conditions, are funded by private and corporate donations and grants. The SWF website does not host or receive funding from advertisers. The SWF and the Board of Directors do not support or endorse any particular treatment, medication, physician, research goals or outcomes.


The SWF Privacy & Terms of Use Policy
This site is operated and maintained by:
The Sturge-Weber Foundation
PO Box 418
Mt. Freedom, NJ, 07970, USA
Phone: 973.895.4445   Fax: 973.895.4846
E-mail: This email address is being protected from spambots. You need JavaScript enabled to view it.

The Sturge-Weber Foundation is committed to protecting privacy for everyone who contacts The Sturge-Weber Foundation, registers on its Web site and becomes a Member.

The Sturge-Weber Foundation's Privacy Policy promises that a Member's personal information, including the data transmitted between computers, paper records and membership information will only be used to better serve Sturge-Weber Foundation Members and the public. The Sturge-Weber Foundation does not release, sell, rent or divulge personally identifiable Members' or ex-Members' information to any person, organization or company for any reason, at any time.

The Sturge-Weber Foundation may, from time to time, aggregate information provided by Members and others who contact The Sturge-Weber Foundation for information. This means The Sturge-Weber Foundation may group nonpersonal membership and "contact" information, e.g., zip codes, geographical regions, ages, to better understand those we serve. The aggregate nonpersonal information may be shared, occasionally, with The Sturge-Weber Foundation's corporate partners and other entities. Nonpersonal information is kept in aggregate form and contains no personal identifiers. It cannot be used to recognize or get in touch with "contacts" or Members. The Sturge-Weber Foundation never releases personal information to anyone for any reason without express permission.

If at any time you wish to receive less information via mail or online (opt-out), or wish to be removed from any or all of our communications, or have any concerns with respect to this policy or any information provided or obtained by The Sturge-Weber Foundation, simply contact us by phone at 800-627-5482 or via e-mail at This email address is being protected from spambots. You need JavaScript enabled to view it.. We will gladly accommodate your request.

Contacts or Members may, however, "opt-in" to receive information from The Sturge-Weber Foundation's corporate partners or other entities or to be contacted by The Sturge-Weber Foundation, its corporate partners or other entities with information about those partners or entities and their programs and products.

The Sturge-Weber Foundation's work is to provide information about Port Wine Stains, Sturge-Weber syndrome and Klippel Trenaunay syndrome to the public. If someone provides a postal address, e-mail address or telephone number, The Sturge-Weber Foundation may contact him or her with the following intent:

  • to notify individuals about the Sturge-Weber Foundation-sponsored events, to provide additional information about Port Wine Stains, Sturge-Weber syndrome and Klippel Trenaunay Syndrome or to introduce services;

  • to invite individuals to join The Sturge-Weber Foundation in its mission of educating the public and supporting research;

  • to give a comprehensive, personal response to individual questions, comments or proposals;

  • to ask for financial support of The Sturge-Weber Foundation through Partnership, or other means.


Cookies are small data files many Web sites place on a visitor's computer.

The Sturge-Weber Foundation's Web site uses a cookie only for controlling access to the password-protected sections for Registered Members. When a Registered Member logs into the Web site, a cookie is stored on their computer. This cookie allows Members to go in and out of the password-protected sections without additional logins.

All cookies are deleted instantly from our users' computer when they log out. If a user does not log out, then these cookies expire (or are deleted automatically) within 24 hours.

If a user chooses the option to be automatically logged into the Web site when they return, a single cookie will remain on their computer in order to allow this to happen.

The Sturge-Weber Foundation does not use cookies to track any information about any Members other than the date of log in.


Donor Privacy Policy

The Sturge-Weber Foundation maintains the highest level of respect for the privacy of its donors and it subscribes to the Donor Bill of Rights.  The Foundation will never publish, sell, trade, rent or share names (unless released for publication), email or mail addresses, or telephone numbers of our donors. 


If you have questions about the Donor Privacy Policy or if you wish to be removed from our email/postal contact lists, then please email This email address is being protected from spambots. You need JavaScript enabled to view it..



The Sturge-Weber Foundation website provides basic information about Sturge-Weber Syndrome, Klippel-Trenaunay and Port Wine Birthmarks. It is not intended to, nor does it constitute medical or other advice. Readers are warned not to take any action with regard to medical treatment without first consulting a physician. The SWF does not promote or recommend any treatment, therapy, institution or health care plan.