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The following discloses the information gathering and dissemination practices for the Web site at (the “Site”), provided for the benefit of individuals affected by PHACE Syndrome and their immediate families by PHACE Syndrome Community, Inc. (PHACE” or “we/us”). Unless otherwise defined in this document, all capitalized terms used in this Privacy Policy shall have the meanings given in the Terms of Use for the Site. This Privacy Policy does not apply to any offline data collection or practices of PHACE. As used in this document, “personal data” means data that may be used to identify a living individual, and does not include aggregate or anonymized data. The Site resides upon servers located in the United States of America. If you are located outside the United States, please be aware that information you provide on the Site is being transferred to and stored in the United States. The Site’s personal data practices and the terms of this Privacy Policy may or may not comply with foreign law, so if you do not agree with this, please do not use the Site.


Personal Data Collected and Purposes for Collection


You can visit our Web Site and learn about the services we provide without providing personal data. However, you do need to provide personal data and be approved by a Site administrator to access most of the content of the Site and/or to use most interactive portions of the Site. We do not collect any personal data on the Site unless you provide it voluntarily. However, certain non-personally identifiable data, such as IP address, is collected automatically from every Site visitor, even if not voluntarily provided.We collect and use personal data in the specific ways listed below, and generally to improve our Site and services to our users, as well as to meet our legal obligations. We also use personal data you provide for other purposes consistent with the reason you provide such information to us:




Our Private Site's registration process requires all users to provide us valid and accurate contact information including name and e-mail address for the site user, as well as information about the member of your immediate family affected by PHACE Syndrome (all of the above, collectively, “Registration Information”). All Registration Information is screened by PHACE to determine whether the registrant meets the above qualification for use of the restricted portions of the Site by a representative of PHACE. All e-mail addresses provided by registrants are verified by having a verification message sent to the provided address, and having the recipient verify his/her having used the Site[KV1] . We may also retain certain personal data that you provide through e-mail or in discussions with our representatives over other electronic means, whether over the Site or otherwise. This personal information may be used in the following ways:For verification of your eligibility as a user at the time of registration;To communicate with you and carry out actions requested by you; andTo share information with law enforcement or other governmental agencies or authorized third parties when requested pursuant to a criminal investigation or alleged illegal activity or any other activity that may expose you, us or another Site user to legal liability.


Forum Information


As a User of the Site, you may choose to post information, photos or other content in the forums or other interactive areas of the Site. This information is retained (subject to our Terms of Use) and displayed to all other Users of the Site. Please do not post or provide any information, photos or other content that you do not have the legal right to make public, or that you do not wish to be viewed by other Users of the Site.


Information Requests


We may ask you to provide personal information in order to allow us to respond to your requests for information or other requests made over the Site.


Emails from Site


Any email messages generated by the Site result directly from the user's actions (such as registration information, posting in a forum, or the user’s choice to subscribe to certain communications), or as necessary to inform you of changes to the Site or events related to the Site, or changes to the Site rules or policies. Users may opt-out of receiving marketing messages by email; see the section below entitled “Communications from the Site and Your Choices”.


Non-personal information


We automatically collect your IP address when you visit our Site. We use your IP address to help diagnose problems with our server, and to administer our Site. Your IP address is used to gather broad demographic information, and to track usage patterns in the Site. We also may collect geo-location information, device identification number and type, computer and connection information, statistics about page views and standard web log information. We do not correlate this information with data about individual users.




We may use a technology referred to as “cookies” (or other similar technology), which are pieces of data on your computer tied to information about you. Based on your browser type and other information provided by our cookies, we use cookies to: (i) customize certain Site content and access; (ii) track the pages on the Site you visit, and which Web address you arrived from and which Web address you leave the Site to go to, in some cases; (iii) allow the Site to remember your user name and password if you so choose; and (iv) for any other purposes permitted under applicable law from time to time.You can decide if and how your computer will accept cookies by configuring your preferences option within your web browser. To disable this function in your web browser, choose the “help” menu and follow the instructions for deleting cookies and preventing your browser from downloading additional cookies. If you choose to reject cookies, you can still browse our Site, but you may be unable to post on the Site or use the Site as a user or Sponsor, or otherwise to access certain aspects of the services available on the Site. We do not store personal or confidential information in cookies (other than user name/password, if requested by you through your browser).


General Uses


In addition to the foregoing, we will use your personal information as specifically described on the Site at the time of collection (for example, for a survey of users if explained on the Site). We may also use your information internally to customize your experience with our company and our Site (for example, adapting the Site to your browser), to help us develop new products and services, to verify your identity, to collect debts or fees owed to us, if any, or to investigate or settle inquiries or disputes, and for other legally required or permissible purposes.


How We Share Your Personal Data


From time to time, the Site may contain an interactive feature requesting that you provide personal information for sharing with third parties (e.g., to register for events) or for other uses as disclosed at the time of collection. In addition, you may choose to post personal data to the interactive portions of the Site, which results in disclosure of such information to other Users of the Site. Other than as described in the previous two sentences, we will not share your personal data collected on the Site with third parties without your permission, other than (i) as necessary or appropriate to carry out transactions you make on the Site, (ii) comply with applicable law, court order or other judicial process, (iii) enforce or apply agreements with you, (iv) protect the rights, property, or safety of us, other users or third parties, (v) as noted in the two paragraphs immediately following below, or (vi) as otherwise required or permitted under applicable law. We do not sell or rent your personal data to third parties. We may also hire contractors to provide certain services on our behalf, including analyses of our Site, information processing and storage, and/or development of new products or services. As part of their services to us, these contractors may have access to some or all of the data that we maintain, including your personal data, but they are required to maintain all data in confidence and to use the data only in order to provide services to us.


Communications from the Site and Your Choices


Once you have registered for the Site, you may receive promotional e-mails regarding the Site and/or our services. You may choose not to receive these promotional e-mails at any time either by following the opt-out instructions on the e-mail in question or by e-mailing us at[KV2] . Please allow us several days in which to process your opt-out request. In addition, the Site may from time to time offer users the opportunity to opt in to other types of communications from the site, such as newsletters, white papers or the like. These communications are provided to you only with your consent, and you may opt out from receiving further editions at any time. Simply follow the instructions included with the publication in question or send an e-mail with the name of the publication to us at Certain e-mail messages from the Site, such as responses to your queries or other transactional messages for all Users of the Site, may not be opted out of, and the only way to avoid receiving these messages is to close your account at Finally, you may choose to post to the Site other information or content in the Site’s forums or other interactive areas intended for viewing by to all authorized Users of the Site. This Privacy Policy sets out how PHACE may use your personal data, not about how third parties (including Site Users) to whom you disclose your information may use and disclose it. If you disclose your personal data to third parties on our Site in this way (or by other means), these third parties may not be subject to limits on their disclosure or use of such information. While we or our administrators screen all requests to become Users of the Site, this screening is only to ensure that these applicants have an appropriate background to view the Materials and other information available on the Site -- we do not have an obligation to police or influence the privacy practices of these Users. When providing your personal data to other Users or third parties, or making it available on the Site, be aware of the attendant risks of doing so.


Children Under 13


The Site is provided for Users over the age of 18. If you are a child under the age of 18, please do not use the Site.




The Site has reasonable security measures in place to protect the loss, misuse and alteration of the information under our control. When you submit sensitive information via our Site, such as photos or information regarding children affected by PHACE Syndrome, that information is subject to secure sockets layer (SSL) encryption technology. However, no data transmission over the Internet can be guaranteed as 100% secure. As a result, while we strive to protect your personal data during transmission, we cannot ensure or warrant the security of any information you transmit to us or receive from us. We urge you to take steps to keep your personal information safe (including your account password), log out of your account after use, and close your web browser. If you do share your password or personal information with anyone, you are responsible for all actions taken in your account’s name. If you lose control of your password, you may lose considerable control over your personal data and may be subject to legally binding actions taken on your behalf. Because of this, if the security of your password has been compromised in any way, you are responsible for immediately notifying us and for changing your password.


Third Party Websites


The Site may contain links to third party websites, including without limitation the page(s) at, which is a Facebook® closed community for support for those who are affected by PHACE Syndrome (the “Facebook Pages”). The Facebook Pages are not subject to this Privacy Policy, but instead are subject to the Facebook Privacy Policy. You agree that it is your responsibility to investigate the privacy policies and practices of any third party website linked to the Site (including the Facebook Pages) prior to use of such third party site(s), and that PHACE shall not be liable for any privacy practices of any such third party website(s).




Suggestions, materials or other intellectual property sent to transmitted to us via the Site are governed by the Terms of Use. All such items are deemed non-confidential and we shall have no obligation of any kind with respect to such items and shall be free to use and distribute them to others, including making products or services using or incorporating them.


Updating or Removal of Personal Data


If your account data, including contact information, has changed, you agree to keep such information current by contacting us at in order allow us to update your information. Similarly, you may contact us if you wish to have personal data removed from the Site. We will strive to accommodate requests to remove the personal data of yourself or any person for which you are the legal guardian. Please be aware that removal from the Site may still entail our storage of such data for purposes of protecting our rights (or for other permitted reasons).


Users Outside the United States


If you live outside the United States and register and/or use the Site, your personal data is being transferred to and stored on servers based in the United States. You hereby consent to such transfer and storage, understanding that the laws in the U.S. regarding data protection may not be as stringent as those of your jurisdiction of residence. If you do not agree to the application of U.S. law to your personal data, please do not register for or use the Site.


Acceptance/Changes to this Privacy Policy


By using our Site, you signify your acceptance of this Privacy Policy. If you do not agree with the terms of this Privacy Policy, please do not register or submit any personal data to us through the Site. Please check this Privacy Policy periodically to inform yourself of any changes. We reserve the right to modify this Privacy Policy at any time, so you should review it frequently. If we make material changes to this Privacy Policy, we will post such revised policy on our Site and notify you by email or otherwise as permitted by law.


Contacting Us


Should you have any questions or concerns about the privacy of your personal data or this Policy, please contact us at the addresses below and we will strive to resolve them:

PHACE Syndrome Community, Inc.

4514 Chamblee Dunwoody Rd #450

Atlanta, GA 30338

Effective Date of Privacy Policy: February 1, 2014

© 2014 PHACE Syndrome Community, Inc.

All rights reserved.

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