The Sturge-Weber Foundation (SWF) is committed to protecting the privacy of our families. To better protect your privacy, we provide this notice explaining our information practices. To make this notice easy to locate, we make it available as a link on our home page. We define personal information to include: name(s), email address, mailing address, phone number, survey responses, registry information and content of your correspondence with us.
When you contact swf@sturge-weber.org, the SWF coordinator, or you use the contact form, your email address and other information included in your email may be forwarded to the appropriate person(s) within SWF or our professional advisors for a response. A copy of your correspondence may be retained at the SWF home office and also by the responding individual.
SWF has established and maintains a mailing database. The mailing list includes families of affected individuals, friends, relatives, physicians, scientists, contributors and others interested in port wine birthmarks, Sturge-Weber syndrome and related birthmark conditions. SWF will never release our mailing list or the names of our member families to any outside organization or third party. However, if an outside organization sends us information for distribution to SWF families, we may mail it to you after the Board approves the mailing.
The family network database directory is a resource to help families connect with other families. When you register with SWF, you can choose whether to share your contact information in the family network database directory or keep it restricted to the mailing list only.
Information determined to be confidential can only be released by written or verbal permission by the person or organization identified. Verbal permission can only be given for a specific release. Any general release must be in writing. The Sturge-Weber International Registry web site provides links to other sites that may be of interest. SWF is not responsible for the privacy practices or content of other such web sites.
SWF is firmly committed to maintaining the confidentiality of your personal information in all of our activities and programs. Every reasonable effort will be made to maintain the security of all personal information in our possession. Access to personal information will be limited to SWF staff and other individuals who have a need to use such information in the course of their work on approved projects. In all instances, this work will be directly overseen by a member of the SWF staff. All individuals will be instructed in the confidentiality requirements of the organization.
Privacy Policy
You must read the SWF Privacy Policy (the “Privacy Policy”) and the Website (defined below) terms and conditions (the “Terms and Conditions”) prior to using any portion of the Sturge-Weber International Registry Website located at www.sturge-weber.org (the “Website”). By using the Website, you agree to all the terms of the Privacy Policy. If you do not agree with the terms of this Privacy Policy, you may not use any portion of the Website. The Website is owned and operated by the Sturge-Weber Foundation (referred to herein as “SWF”). SWF respects your privacy and has written the Privacy Policy so that you are aware of the information SWF collects from you, how that information is protected, and how it is used. If you have any questions or comments regarding the Privacy Policy, or you feel that SWF is not abiding by its posted Privacy Policy, please contact us via registered mail at:
President and CEO
The Sturge-Weber Foundation
PO Box 418
Mount Freedom, New Jersey 07970-0418
By phone or fax: (973) 895-4445
By email: swf@sturge-weber.org
1. General
a.SWF has the highest regard for your privacy. We realize that our service can only work if we build trust with our user communities. For that reason, our first priority is making sure users are confident in the security of the data they share with us. The Privacy Policy outlines the type of information SWF collects from the users of the Website and how it is shared with other parties. We reserve the right to modify the Privacy Policy at any time, and without prior notice, by posting amended terms and conditions on the Website. We encourage you to review the Privacy Policy periodically for any updates or changes.
2. Collection, Use and Disclosure of Information
a. Collection of Information. All of the information you provide to SWF will be maintained in a secure database, and any information that could identify you will not be shared without your express written consent.
b. Use and Disclosure of Information. The goal of this registry is to make the information you provided searchable, while protecting your identity. De-identified data (information where all personal identification has been removed) gathered from this profile will be made available to registrants of the Website in the hope that analyses of a substantially larger database will support breakthroughs and clinical trials that could lead to better treatments and care management. SWF will perform the searches for specific questions within the SWF registry and provide reports back to you and the medical research community.
Registrants can also perform searches of this de-identified data. Any information you provide to third party genetic counselors or other professionals whom you have contacted through the Website will be subject to their policies with respect to privacy and nondisclosure of information. We encourage you to familiarize yourself with those policies.
SWF may employ independent contractors, vendors and suppliers (“Outside Contractors”) to provide specific services and products related to the Website or to the services provided on the Website, including but not limited to, performing general statistical analysis, maintaining an email suppression list as may be required by state and/or federal law, fraud screening, testing and implementation of special services to users, and developing applications for the Website and the services provided on the Website. These Outside Contractors may have limited access to information collected on the Website, including personally identifiable information, in the course of providing such products or services.
3. Withdrawal of Information
a. At any time, you reserve the right to withdraw your information from the Website registry database by contacting the SWF Coordinator and your profile will be removed.
4. Protection of User Information
a. All users are required to review and abide by the Website Terms and Conditions and the Privacy Policy. SWF will use commercially reasonable methods to protect the security of information and data submitted to the Website. We employ best practices from our networking to our secure servers to protect your data from intrusion. Users should keep in mind, however, that no internet transmission is ever 100% secure or error-free. Where you use passwords, ID numbers, or other special access features on the Website, you should take special care to safeguard them.
6. Ownership of Information
a. All of the information you provide to SWF in connection with the Website is owned by SWF.
7. Third Party Notifications/Advertising
a. SWF reserves the right, in its discretion, to allow third parties to provide advertising or notices when you visit the Website. These companies may use information you provided on this Website (excluding your name, address, email address or telephone number) and other sites in order to provide advertisements or relevant notifications on the Website and other sites about goods and services that may be of interest to you. SWF will encourage such companies to follow best practices with respect to the collection and use of non-personally identifiable information and personally identifiable information that was not obtained from your participation on the Website; however, SWF assumes no responsibility for the activities of the third parties with respect to the collection and use of such information.
8. Cookies
a. When you visit the Website, we may send one or more cookies to your computer that will uniquely identify your browser. In addition, in the course of serving advertisements to this site, our third-party advertisers may place or recognize a unique "cookie" on your browser. A cookie is a piece of data stored on the user's hard drive containing information about the user. Cookies may be used by SWF to enable it to track and target the interests of users to enhance their experience on the Website. Usage of a cookie is in no way linked to any personally identifiable information while on the Website. If a user rejects the cookie, they may still use the Site. Some of SWF’s business partners, advertisers and sponsors use cookies, but SWF has no access to or control over these cookies.
9. Log Files; Web Beacons
a. SWF may use log file information sent by your web browser (which may include information such as your web request, Internet Protocol (“IP”) address, browser type, browser language, referring/exit pages and URLs, platform type, and other information) to analyze trends, administer the Site, track the movement of users, and gather broad demographic information for aggregate use. IP addresses are not linked to personally identifiable information. SWF may also employ “web beacons” (also known as clear gifs) to track online usage patterns of users. This information is not linked to personally-identifiable information. Web beacons may also be employed for tracking and receipt purposes in connection with web-based emails we send to users.
10. Website Links
a. The Website may contain links to other Web sites. The Privacy Policy applies solely to information collected on or submitted to the Website. SWF is not responsible for the privacy practices of other sites linked to the Website or third party advertisements served on the Website. SWF encourages users to read the privacy policies of websites and third party advertisers when they connect to them through the Website.
11. Communications From SWF
a. From time to time, SWF or other related entities will notify users of updates and other valuable information about SWF, the Website and related clinical and research information. By using the Website, or registering or subscribing for services provided on or through the Website, users consent to being contacted by SWF and related entities, and to receiving such updates and information. SWF encourages related entities, including its business partners, to follow best practices with respect to email communications, security and privacy. However, SWF cannot control, and assumes no responsibility for, any contact of users by related entities, including its business partners. In the case of emails coming directly from SWF, such emails will clearly be from SWF and will include instructions on how to unsubscribe from future emails.
12. Required Disclosures
a. You understand and agree that SWF may disclose information provided if in its good faith belief such disclosure is required by applicable law.
13. Contact Us; Member Accounts
a. If a user elects to contact SWF through contact information provided on the Website, or registers for an account, the user may be asked for any of the following: name, password, e-mail address, e-mail subject and a message containing their inquiry (in the case of a “contact us” inquiry), and certain profile and account information (in the case of a member account registration). SWF stores this data in order to reply to the submitted inquiry or to establish and service the member account. The submitted information is then owned by SWF and subject to the terms detailed in the Privacy Policy.
14. Children Under The Age Of Thirteen (13)
a. SWF is unable to prevent children under the age of thirteen (13) from visiting the Website; however, no part of our Website is directed at or intended for persons under the age of thirteen (13). If you are under the age of thirteen (13), please do not access the Website at any time or in any manner. In order to comply with the Children's Online Privacy Protection Act, SWF will not knowingly collect personally identifiable information from children under the age of thirteen (13). By providing personal identifiable information through the Website including, but not limited to, your name and e-mail address, you represent and warrant that you are at least thirteen (13) years of age and that you agree to comply with the Privacy Policy. If, at any time, SWF learns that personally identifiable information has been collected from persons under the age of thirteen (13) without verified parental consent, SWF will take the appropriate steps to delete such information.
15. Notification Of Changes
a. You should review the Privacy Policy whenever you use the Website in order to be aware of the ways that your information is used. SWF reserves the right to change the Privacy Policy at any time, without prior notice.