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.
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”.
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.
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
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
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.
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
© 2014 PHACE Syndrome Community, Inc.
All rights reserved.