National PKU News
How Much Phe? Website
Effective Date: 8/27/2015
IF YOU ARE A PARENT OR LEGAL GUARDIAN OF A CHILD AND YOU CREATE A PROFILE FOR YOUR CHILD ON THE SITE OR OTHERWISE PROVIDE CONSENT FOR YOUR CHILD TO USE THE SITE, YOU ARE BOUND BY THIS POLICY AND OUR TERMS OF SERVICE WITH RESPECT TO YOUR CHILD’S USE OF THE SITE. PLEASE REVIEW THE “CHILDREN’S PRIVACY” SECTION BELOW.
INFORMATION COLLECTION PRACTICES
General. When you visit the Site without registering or purchasing a subscription, you can browse without submitting personal information about yourself. If you register or purchase a subscription to the Site, we will collect some personally identifiable information from you, including your full name, user name, email address, billing address, date of birth, phone number, and a password that you select. When you interact with the Site, we also receive and store certain additional types of information which, in general, does not directly identify you. For example, we automatically receive and record information on our server logs from your browser including your IP address, browser type and language, referring/exit pages and URLs, other browser history, platform type, number of clicks, landing pages, cookie information, the pages you requested and viewed, the amount of time spent on particular pages, and the date and time. This Section of the Policy outlines the various ways that information is collected from the Site. Please fully review this Policy before you use the Site or submit information to it.
Registration and Subscription. If you register or purchase a Subscription to the Site, you must provide your current, complete, and accurate information. Your account will be associated with a unique username and password which may only be used as permitted by the TOS. It is your responsibility to keep your information up to date. We are not responsible for any problems, interruptions in access, or liability that may arise if you do not give us complete and accurate information or if you fail to update your information so that it is current. When you register or purchase a Subscription, you must give us your full name, user name, email address, billing address, and a password. We may also collect information in order to verify your age in order to determine whether you are old enough to use the Site. If you purchase a Subscription, you must be at least 18 years of age or the age of legal majority in your jurisdiction, whichever is higher.
Diet and Health Tracking Features. Features of the Site permit users to track certain information about diet and health including: blood phe levels; foods, medications, and supplements consumed; and other information. If you are an account holder you can personally use the tracking features to track your own information and you can designate additional users and allow additional users (including your children) to track their own diet and health information. If you use the tracking features (as an account holder or a designated user) the Site will request additional personal information about you such as information about your medical conditions and diagnoses. The information submitted in connection with Site tracking features is referred to in this Policy as “Tracking Information.”
Correspondence. If you send us personal correspondence, such as emails or letters, or if other users or third parties send us information about your use of the Site, we may save the information in a profile specific to you.
Automatically Collected Information. We will collect some information about you and any device you use to access the Site automatically using cookies, pixels, and other tracking technologies. In general, this automatically collected information does not directly identify you. This collection may include, but is not limited to, your IP address, browser type and language, referring/exit pages and URLs, other browser history, platform type, number of clicks, landing pages, cookie information, the pages you requested and viewed, the amount of time spent on particular pages, and the date and time. We collect this information for the purposes described in this Policy, including to better understand our customer base and to improve the quality of our services.
Pixels (aka web beacons/web bugs/java script). Pixels are tiny graphics with a unique identifier that are used to track the online movements of web users. Unlike cookies, which are stored on a user’s computer hard drive, pixels are small graphics that are about the size of the period at the end of the sentence that are embedded invisibly on web pages or in HTML-based emails. Our third-party analytics provider may place pixels on our web site that track what other web sites you visit (both before and after visiting the Site). Our third-party analytics provider uses information obtained from pixels to help us improve our business and the Site. We do not control the use of pixels by third parties. See the section on “Third-party Providers” below and review the privacy policies of each of the third party providers for more information on third party pixels.
Third-Party Providers. We use third parties to help us operate and improve the Site. We may provide these third parties information we collect and they may collect information from you and about your use of the Site. We may provide information we collect to third parties and it will, unless specifically noted otherwise in this Policy, be governed by this Policy and may only be used by those third parties to help us operate or improve our business or the Site and provide services to us. We do not control information collected by third parties and are not responsible for their use of that information. Please review their privacy policies for more information on their information collection, use, and sharing practices.
Information Collected from Children. The Site is intended for users of all ages and we may collect personal and other information (as described in the INFORMATION COLLECTION PRACTICES section above) from children under the age of 13 (“child” or “children”). The information collected includes: Tracking Information, automatically collected information (described above) and other information that is provided by the child. In general, we collect this information after you (the parent or legal guardian) designate your child as a user of the Site tracking features by setting up a profile, activating the tracking feature for your child, and providing consent for your child to use the Site. Our Site and our business practices are not designed to enable a child to make personal information publicly available. If we discover that we have collected information from a child in a manner inconsistent with applicable law, we will use commercially reasonable efforts to either delete that information or seek the parent or legal guardian’s consent.
Use of Information Collected from Children. We and our third party service providers use personal and other information about children for the purposes described in this Policy, including, as described in the USE OF INFORMATION and INFORMATION SHARING sections below. These uses include operating, maintaining, and improving the Site; tracking use of the Site including health and diet tracking features; and service related calls, emails, and text messages. In addition, if you set up a profile under your account so your child can use the Site’s diet and health tracking features, you, as the account holder, will be able to see all Tracking Information associated with your child’s user profile Please see Third-Party Providers, Google Analytics, Payment Processing, and Mail Chimp Mailing List Service Provider sections above and the third party privacy policies linked above for information regarding third party collection, use and sharing practices, including collection, use, and sharing of information about children.
Parental Choice. If you want to correct any information associated with your child’s profile, you can do so by making changes through the “Account” section of the Site. delete information associated with your child’s profile you must terminate your child’s user profile and submit a request by emailing us at firstname.lastname@example.org. If you request that we delete your child’s information and you have not terminated your child’s user profile under your account, we will automatically terminate your child’s user profile when we delete the information. To protect a child’s privacy, we will take commercially reasonable steps to verify a parent or legal guardian’s identity prior to deleting a child’s information. You may also consent to our collection of your child’s information without consenting to the disclosure of their information to third parties.
Contact Information. Parents or legal guardians may contact us at:
National PKU News
PO Box 43552
Montclair, NJ 07043
We provide Site users the ability to post information on the Site. If you are a California resident who is under 18 and you are unable to remove content or information that you uploaded to the Site that is posted in a public area by following the instructions provided on the Site, you may request removal using the contact information listed above. When requesting removal you must be specific about the information or content you want removed and provide the URL for each page on the Site where it is located so that we can locate it.
We are not required to remove any content or information if: (1) federal or state law requires us or a third party to maintain the content or information; (2) the content or information was not posted by the user requesting removal; (3) we anonymize the content or information so that you cannot be identified; (4) you don’t follow our instructions for removing or requesting removal; or (5) you received compensation or other consideration for providing the content or information.
REMOVAL OF YOUR UPLOADED CONTENT OR INFORMATION FROM THE PUBLIC AREAS OF THE SITE DOES NOT ENSURE COMPLETE OR COMPREHENSIVE REMOVAL OF THAT CONTENT OR INFORMATION FROM OUR SYSTEMS OR THE SYSTEMS OF OUR SERVICE PROVIDERS.
We are not required to delete the content or information uploaded by you; our obligations under California law are satisfied so long as we anonymize the content or information or render it invisible to other users and the public. Also, content and information you post that has been copied or reposted by a third party is outside of our control and will not be removed.
ONLINE TRACKING AND YOUR CHOICES
INFORMATION SECURITY MEASURES
Keeping secure personal information that we collect is of great concern to us. While we have mechanisms in place to safeguard your personal information once we receive it, no transmission of data over the Internet or any other public network can be guaranteed to be 100% secure. When you provide information to the Site, you do so at your own risk.
USE OF INFORMATION
General. We may use your personally identifiable information (including Tracking Information) to manage your Subscription, including Subscription renewals. We may also use it to operate, maintain, and improve the Site (including providing you a more personal experience); communicate with you; provide you information about products and services (including products and services of third parties); market, fundraise; for research purposes (including academic, medical, marketing and other research); resolve disputes; collect fees owed; detect and protect against errors, fraud and criminal activity; assist law enforcement; enforce this Policy and the TOS; and any other purpose described in this Policy or that we describe to you at the time of collection.
Service-related Calls or Text Messages. If you consent and provide your phone number, we may call you or send you text messages at the number you provide. These calls and text messages may be made for any purpose that you provide consent for, including, for example, for alerts, to remind you to use the Site tracking features, to provide periodic summaries of information, and fundraising. These calls and text messages may use an automatic telephone dialing system and you may incur standard usage charges from your carrier. You should only consent and provide a phone number for an account where you are the account holder (i.e., you set it up and pay the service charges) or you are a primary user (i.e., you are authorized by the account holder to use the number, such as on a family plan).
Service-related Emails. We may send you service-related emails. For example, if our Site is temporarily unavailable for maintenance, we might send you an email notice. You may not opt-out of service-related messages which are not promotional in nature. If you do not wish to receive these emails, you have the option to cancel your Subscription.
Non-identifying Information. We may use non-identifying information for any lawful purpose, including analyzing trends, research, Site administration, tracking users’ movements around the Site, and to improve our business and the Site.
Retaining Your Information. In general, we will retain your information indefinitely, or as long as legally required or allowed. If you cancel your Subscription or your Subscription is otherwise terminated, we may but are not obligated to delete information we have collected or obtained from third parties and we may continue to use and disclose it in accordance with this Policy. We will, however, delete information about your child as described in the Parental Choice section above.
Tracking Information. If your use of the Site tracking features is as an additional user under another user’s Subscription, the user that purchased the Subscription will be able to view and edit all Tracking Information uploaded by you or stored in connection with your user profile.
Legal Requirements. In some cases, we may disclose your personally identifiable information as required by law; if we believe that disclosure is needed to protect our rights; to government regulators; to law enforcement authorities; in connection with any judicial proceeding, court order, subpoena, or legal process served on us or the Site; and to respond to a physical threat to you or another person.
Insolvency and Business Transitions. If we should ever file for bankruptcy or engage in a business transition such as a merger with another company or if purchase, sell, or reorganization of all or a part of the Site or our business or assets, we may disclose your personal Information, including to prospective or actual purchasers in connection with one of these transactions.
Disclaimer. We cannot ensure that all of your personal information will never be disclosed in ways not otherwise described in this Policy. For example, we may be required to disclose personal information to the government or third parties under certain circumstances, third parties may unlawfully intercept or access transmissions or private communications, or users may abuse or misuse your personal information that they collect from the Site. No transmission of data over the internet can be 100% secure.
HOW TO OPT-OUT OF RECEIVING EMAILS
If you would like to stop receiving marketing email from us or from third parties, please click on the opt-out link in the non-service related emails you receive. If you opt out, you will still continue to receive service-related emails.
CALIFORNIA SHINE THE LIGHT LAW
ACCESSING AND UPDATING YOUR PERSONAL INFORMATION
If would like to cancel your Subscription or update your personally identifiable information or the information associated with additional users designated under your account, you may make such changes on the “Account” section of the Site. If you do not want your information accessed or stored as described in this Policy, you should not subscribe to the Site.
If you have questions or concerns about our privacy practices, please email us at: email@example.com.