Privacy Policy

National PKU News
How Much Phe? Website
Privacy Policy
Effective Date: 8/27/2015

National PKU News (“we,” “us,” “our”) is committed to protecting the privacy of How Much Phe? Website (“Site”) users. When you access, browse or use the Site, information will be collected, transferred, processed, stored, and disclosed in accordance with this Privacy Policy. This privacy policy (“Policy”) governs the information collection and disclosure practices for the Site. By accessing, browsing, or using the Site, including purchasing a subscription via the Site, you expressly consent to the collection, transfer, use, processing and storage of your information (including personal information), as described in this Privacy Policy including the collection, transfer, use, processing and storage and use of information regarding your child if you set up their user profile within the Site. Any capitalized terms not defined herein have such definitions as set forth in the Site Terms of Service (“TOS”). This Policy is incorporated in the Terms of Service. IF YOU DO NOT AGREE WITH THIS POLICY OR THE INFORMATION COLLECTION, USE, AND DISCLOSURE PRACTICES DESCRIBED IN THIS POLICY, DO NOT USE THE SITE, PURCHASE A SUBSCRIPTION, OR REGISTER FOR AN ACCOUNT ON THE SITE.

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.

Cookies. A cookie is a small text file that is stored on a user’s computer. Our third-party analytics provider uses cookies to record information about your activities on the Site to “remember” you when you return to the Site. Some cookies remain on your computer until you delete them. Others, like session ID cookies, expire when you close your browser. You may set your browser setting to attempt to reject cookies and you may still use the Site. See the section “Do-Not Track Settings” below for more information on how the Site may respond to your browser settings. We do not control the use of cookies by third parties. See the section on “Third-Party Providers” below and review the privacy policies of all third-party analytics and billing providers for more information on third-party cookies.

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.

Google Analytics: We use Google, a third-party analytics provider, to collect information about Site usage and the users of the Site, including demographic and interest-level information. Google uses cookies and pixels in order to collect demographic and interest-level information and usage information from users that visit the Site, including information about the pages where users enter and exit the Site and what pages users view on the Site, time spent, browser, operating system, and IP address. Cookies and pixels allow Google to recognize a user when a user visits the Site and when the user visits other websites. Google uses the information it collects from the Site and other websites to share with us and other website operators information about users including age range, gender, geographic regions, general interests, and details about devices used to visit websites and purchase items. We do not link information we receive from Google with any of your personally identifiable information. For more information regarding Google’s use of cookies, pixels, and collection and use of information, see the Google Privacy Policy. If you would like to opt out of Google Analytics tracking, please visit the following link: Google Analytics Opt-out Browser Add-on.

Payment Processing: If you purchase a Subscription, you must provide payment information such as a credit card number along with the expiration date and security code. Payments and payment information are processed by our third party payment processors, Recurly and Stripe. Recurly and Stripe will collect your payment information and may retain it to process your initial Subscription fee as well as renewal Subscription fees. We do not control Recurly or Stripe and are not responsible for their collection or use of your payment information. Please review Recurly’s privacy policy located at and Stripe’s privacy policy located at for more information on their information collection, use, and sharing practices.

MailChimp Mailing List Service Provider: MailChimp helps us design and send email messages to Site users. We or our other service providers may provide MailChimp with user email addresses so they can assist us with the delivery of email messages to Site users. Please review their privacy policy located at for more information on their information collection, use, and sharing practices.

Children’s Privacy
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 [email protected]. 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
[email protected]

California Minors.
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.


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.

As discussed above, because we and our third party service providers automatically collect Site usage information through the use of cookies, pixels and other tracking technologies (including as described in the “Automatically Collected Information” section above, and otherwise in this Policy), your selection of the “Do Not Track” option provided by your browser may not have any effect on our collection of automatically collected information. One way to attempt to “opt out” of the collection of any information through cookies and some (but not all) other tracking technology is to actively manage the settings on your browser to delete and disable cookies and other tracking/recording tools. However, getting a “Do Not Track” signal to work as you might want is difficult and may not be possible. Using browsers as an example, not all tracking technologies can be controlled by browsers; unique aspects of your browser might be recognizable even if you disable a tracking technology; not all settings will necessarily last or be effective; even if a setting is effective for one purpose data still may be collected for another; and even if one website observes a “Do Not Track” signal, that website usually will not be able to control other websites.

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.

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.

Generally. We will not sell or rent any of your personal information to third parties for marketing purposes. However, we may disclose your information to any affiliated entity or organization and to agents and service providers. We may also share non-identifying information with third parties for any lawful purpose, including analyzing trends, research, Site administration, tracking users’ movements around the Site, and to improve our business and the Site. Use of information by affiliated entities and organizations will be subject to this Privacy Policy or an agreement that is at least as restrictive as this Policy. For information on use of information by agents and service providers, see Third Party Providers 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.

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 Civil Code Section 1798.83 permits California residents to request and obtain from us once a year, free of charge, a list of the third parties to whom we have disclosed personal information (as defined under that statute) of that California resident, for direct marketing purposes in the preceding calendar year and the categories of that kind of personal information that was disclosed to them. If you are a California resident and you wish to make such a request you may contact us by using the contact information in the “Privacy questions” section at the bottom of this Privacy Policy.

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 protected].