National PKU News
How Much Phe? Website
Terms of Service
Effective Date: 5/24/2018
The National PKU News (“NPN”) How Much Phe? Website (“Site”) is a subscription-based website that provides access to food phenylalanine (“PHE”) value estimates as an informational service. If you register for a subscription (“Subscription”) to the Site, you will gain web and mobile device access to NPN’s database of PHE values.
These Terms of Service (“Terms”) are a legal agreement between you and NPN that governs your use of the Site and any Subscription you may purchase. Your access to the Site is conditioned upon your acceptance of these Terms and you should not register for a Subscription or use the Site if you do not agree to these Terms. THIS AGREEMENT CONTAINS A MANDATORY ARBITRATION PROVISION AND CLASS ACTION WAIVER. PLEASE REVIEW SECTION 20. You must be a resident of the United States and 18 years of age or older to use the Site and to purchase a Subscription. By registering, you certify that you are 18 years of age or older and a United States or Canadian resident.
1. This Site does not provide medical advice.
The contents of this Site, including food lists, PHE values, and all other information (“Content”) is for personal informational purposes only and is not intended to be and should not be used for or as a substitute for professional medical advice, diagnosis, or treatment. NPN is not affiliated with any medical establishment and does not warrant or represent that the Content is appropriate or safe for your particular health needs. This Site is not intended for use by pregnant women or those whose physicians advise against using this Site. This Site is not intended for use by children under the age of 18 unless authorized and supervised by the child’s parent or legal guardian.
2. Phenylalanine values on this Site are Only Estimates.
SOME OF The PHE values listed on this Site are estimates based on protein or PHE information provided by the United States Department of Agriculture, food manufacturers, restaurants AND OTHER THIRD PARTY RESOURCES. PHE values are not exact because PHE and protein content may vary based on factors such as geography, climate, and differing agricultural practices AND FOODs AND FOOD INGREDIENTS AND QUANTITIES MAY CHANGE AFTER WE CALCULATE OUR ESTIMATES. Reliance on any PHE value listed on this Site is solely at your own risk. PHE values ON THE SITE MAY BE updated from time to time, but NPN makes no representations, warranties, or conditions about the quality or accuracy of any Content. PHE values on THE SITE are subject to change without notice and you should REGULARLY check the Site for updated information.
3. Registration, Username, and Password.
You may register for a Subscription to the Site. If you register, you must provide NPN with your current, complete, and accurate information. If you purchase a Subscription you are entitled to one account with a single user username and password. Your user name and password may only be used by you and any other individual that lives with you that is responsible for preparing food for you. If you allow your account to be accessed by another authorized individual in your household, you must inform them and obtain their agreement to these Terms. By using the Site, each user agrees to and is bound by these Terms. You are responsible for keeping your username and password confidential and other than as described in this Section, you may not authorize any third party to use them. You agree that NPN may attribute all use of your username to you and that you are responsible for all activity that occurs with your username and password. Please notify NPN immediately at email@example.com if the security of your username or password has been compromised.
4. Subscriptions, Fees, and Billing.
4.1 Subscription Term. The term of your Subscription begins on the date you purchase a Subscription (“Purchase Date”) and continues for one year. Each year, on the anniversary of the Purchase Date, your Subscription will automatically renew for successive one-year terms. You agree that your Subscription will auto-renew on an annual basis unless you submit a cancellation request on the “Account” section of the Site prior to the anniversary of the Purchase Date. Prior to auto-renewal, NPN will send you an email to the email address you provided with your registration reminding you of the date your Subscription will auto-renew.
4.2 Subscription Charges and Payments. If you purchase a Subscription to the Site, you will be charged in advance for the annual subscription fee and renewal fees will be charged automatically on each anniversary of the Purchase Date. You will be billed immediately for your initial Subscription. Each year, on the anniversary of the Purchase Date, you will be billed automatically in advance for the entire annual subscription for the one-year renewal term at the then-current Subscription price. By purchasing a Subscription, you authorize NPN, or any third party that processes payments for NPN, to use the payment method you enter when you register on the Site. If NPN uses a third party payment processor, the processor’s terms may be presented to you and you you agree to them. You also agree that third party processor, not NPN, is solely responsible for all claims you may have with respect to the processing of your payment.
4.3 Subscription Prices and Price Changes. Stated Subscription prices exclude all taxes and third party charges (e.g., internet or mobile access fees, credit card fees, etc.), unless stated otherwise or prohibited by applicable law. If you purchase a Subscription, you will be responsible for any taxes and for all other charges (e.g., third party charges). All fees will be charged in U.S. Dollars. NPN reserves the right to change Subscription prices at any time and NPN may begin charging for products, content or services that it currently offers for free. NPN will notify you at least 30 days in advance if the price of your auto-renewing annual Subscription fee has changed. If you do not agree to a price change for your Subscription, you must cancel your Subscription and stop using it. Your continued use of your Subscription past the effective date of a price change will constitute your acceptance of the price change. If you cancel your Subscription, your access to the Site will terminate upon the expiration of your annual subscription.
4.4 Refunds. Unless otherwise provided by applicable law, all Subscription purchases are final and fees are earned when received. Subscription charges are not returnable, refundable, transferrable, or redeemable in whole or in part. NPN will not issue any full or partial refunds.
4.5 Cooling Off Period. When you sign up for a Subscription, you agree that NPN begins providing you services immediately (including by granting you the right to access and view the Content) and that you will not be entitled to a cancellation or “cooling off” period, unless applicable law requires a cooling off period despite your waiver. You may cancel your Subscription at any time as provided in Section 4.8.
4.6 Your Billing Information. You agree to provide accurate contact and billing information when registering for a Subscription to the Site. If your billing information is not accurate or if NPN cannot process your payment, NPN may cancel your Subscription purchase or renewal and terminate your access to the Site. NPN may request an alternate form of payment if your payment cannot be processed.
4.7 Cancelling Your Subscription. You may cancel your Subscription at any time. To cancel your Subscription, you must submit a cancellation request on the “Account” section of the Site. Cancelling your Subscription will not alter your obligation to pay all charges made to your billing account, unless provided otherwise under applicable law. You agree that cancelling your Subscription will permanently terminate your access to the Site at the expiration of the annual Subscription period. Upon termination, NPN may (but is not obligated to) delete your search history and all information, files, and communications associated with your account. NPN will not be liable to you for any termination or suspension of your account, Subscription or access to the Site.
5. Third Party Websites, Products, and Services; Additional Terms.
You may need to use or obtain additional products or services in order to use your Subscription, such as a device, internet access, or a data connection. You must obtain or use these products or services separately and pay all associated charges (including for internet access or other data transmission).
6. Appropriate Use of the Site and Content.
The Site and Content is provided to subscribers for individual, personal, and non-commercial use. If you purchase a Subscription, you may view the Content on your device for your personal use. Except for the limited right to view set forth in Section 6, you may not download, copy, sell, print, rent, lease, issue, distribute, transmit, broadcast, modify, perform, display, transfer, upload, post, create derivative works of, exploit, sublicense or otherwise assign the Content to any third party. Nor may you communicate the Content to the public, remove any proprietary notices on the Content, or attempt to disable, bypass, modify, defeat, or otherwise circumvent any digital rights management or security system used as part of the Site or Content. You further agree not to interfere with the proper functioning of the Site, not to use the Content in a way that suggests you are a representative of NPN, and not to use the Content as a platform for external applications. The Content may not be used to develop applications, services, websites, or any other functionalities that leverage the Site or Content. Any scraping, automated access, or other unauthorized access to and storage of Content will result in immediate termination of your Subscription and/or access to the Site. You may not use the Site or Content for any illegal purpose. Use of the Content for any purpose other than what is described in this Section is prohibited.
7. Site Availability.
You may access the Site if and when it is available. NPN does not guarantee availability of the Site or Content. The Site is operated and maintained by volunteers and may occasionally be down for service, upgrades, or for other reasons. To the maximum extent authorized under applicable law, NPN reserves the right to change, remove, delete, restrict, block access to, or stop providing any or all of the Site and Content at any time and without notice.
8. Site Support.
NPN has no obligation to provide any support in relation to the Site, your Subscription, or Content.
9. No Warranties.
To the maximum extent permitted by applicable law, the Site and all Content is provided “AS IS,” “WITH ALL FAULTS,” and “AS AVAILABLE” and the entire risk of use and performance, remains with you. NPN does NOT MAKE ANY representations, warranties, or conditions, express, implied, or statutory and hereby disclaims any implied warranties or conditions of merchantability, merchantable quality, durability, fitness for a particular purpose, title, quiet Enjoyment, or non-infringement. In particular, NPN makes no warranty that the Site or Content: (A) will meet your requirements; (B) will be available or provided on an uninterrupted, timely, secure, or error-free basis; (C) will be accurate, complete, or reliable, or (D) will be free from viruses, worms, or other harmful or malicious components. Nor does NPN warrant that any defects or errors on the Site OR CONTENT will be corrected. NPN does not assume any liability relating to delays or interruptions attributable to third party failures beyond its control. The Site and All Content you download or obtain from the Site is accessed at your own risk, and you will be solely responsible for any damage or loss that results therefrom. You may have additional rights under your local laws that these Terms cannot change. In particular, to the extent local legislation implies statutory terms which cannot be excluded, THOSE terms are deemed incorporated into this document but NPN’s liability for a breach of THOSE statutory implied terms is limited in accordance with and to the extent permissible under THAT legislation.
10. Disclaimer of Certain Damages.
In no event will NPN be liable for any consequential, special, incidental, indirect, or punitive damages; for LOSS OF profits, BUSINESS, GOODWILL, ANTICIPATED SAVINGS, or USE; LOSS OR CORRUPTION OF DATA, confidential INFORMATION, or other information; business interruption; personal injury; wrongful death; property damage; loss of privacy; failure to meet any duty of good faith or reasonable care; negligence; and any other pecuniary or other loss whatsoever, arising out of, based on, resulting from, or in any way related to these Terms, The Site, the Content, or your Subscription, even if NPN has been advised of the possibility of such damages.
11. Limitation of Liability and Exclusive Remedies.
To the maximum extent permitted by applicable law AND TO THE EXTENT THEY ARE NOT EXCLUDED OR DISCLAIMED UNDER SECTION 10, NPN’s maximum, aggregate liability to you, and your exclusive remedy under these Terms for any and all damages, injuries, and losses arising from any and all claims and causes of action arising out of, based on, resulting from or in any way related to these Terms, The Site, the Content, or your Subscription will be to discontinue use of the Site and Content.
12. IMPORTANT CONSUMER NOTICE.
Some jurisdictions do not allow certain DAMAGE LIMITATIONS SUCH AS the LIMITATION OF LOSS OR LIABILITY FROM INTENTIONAL ACTS (INCLUDING FRAUD, FRAUDULENT MISREPRESENTATION, AND FAILURE TO DISCLOSE DEFECTS), PRODUCT LIABILITY, or for DEATH OR personal injury. Nothing in section 10 or 11 will be interpreted as excluding liability which cannot under Applicable law be excluded. IF YOU LIVE or are otherwise subject to the laws IN ONE OF THOSE JURISDICTIONS any statutory entitlement available to you will be deemed limited to the extent (if at all) permissible under that LAW AND, IF ANY LIMITATION IS NOT PERMITTED, THE EXCLUSION IN SECTION 10 OR 11 MAY NOT APPLY TO YOU.
13. Independent Remedies.
To the extent permitted by applicable law, the exclusion of damages under Section 10 is independent of your exclusive remedy in Section 11 and it survives even if the exclusive remedy fails of its essential purpose or otherwise is deemed unenforceable. Each of the limitations of liability in Sections 10 and 11 apply without regard to whether loss, liability, or damage arises from (a) breach of contract; (b) breach of warranty; (c) fault or tort, including negligence and misrepresentation; (d) strict liability; or (e) any other cause of action, to the maximum extent the exclusions and limitations are not prohibited by applicable law.
You hereby agree to defend, indemnify, and hold NPN, its directors, officers, employees, agents, partners, suppliers, and licensors harmless and will keep them indemnified from any third party claim or demand, including reasonable attorneys’ fees, relating to, arising from, or allegedly arising from (a) your use of the Site and activities occurring under with your username; (b) any violation of these Terms; or (c) your violation of any other party’s rights or applicable law.
15. Copyright Infringement; Notice and Takedown Procedures.
NPN relies on our users of the Site to bring copyright violations to our attention. If you are aware of infringing material on the Site, please notify NPN at:
How Much Phe
c/o National PKU News
PO Box 43552
Montclair, NJ 07043
- To be effective, the notice must include the following:
- A physical or electronic signature of a person authorized to act on behalf of the owner of the material;
- Identification of the copyrighted work claimed to have been infringed;
- Identification of the material that is claimed to be infringing including information reasonably sufficient to permit NPN to locate it on the Site;
- Your name and the mailing address, telephone number, and email address where we can contact you;
- A statement that you have a good faith belief that use of the material on the Site is not authorized by the copyright owner, its agent, or the law; and
- A statement that the information in your notice is accurate, and under penalty of perjury, that you are authorized to act on behalf of the owner of an exclusive right that is allegedly infringed.
Notwithstanding the foregoing, NPN does not guarantee any action based upon the receipt of your notice. ALL NOTICES THAT DO NOT COMPLY WITH THE ABOVE REQUIREMENTS WILL RECEIVE NO RESPONSE. If you reside outside of the United States, please understand that filing a notice or counter-notice may lead to legal proceedings between you and the complaining party to determine ownership or right to use. Therefore, please be aware that there may be adverse legal consequences in the United States and/or your country of residence including Canada if you make a false or bad faith allegation by using this process.
NPN may give you all required notices (including legal process) by any lawful method, including by posting notices on the Site or by sending it to any email address that you provide to NPN. You agree to send NPN notices by mailing them to the following address:
National PKU News
PO Box 43552
Montclair, NJ 07043
17. Modifications to these Terms.
NPN reserves the right to change these Terms at any time upon notice to you. You agree to periodically review these Terms for changes and you can review the most current Terms at any time at https://howmuchphe.org/site/terms/. Updated Terms are binding on you as of the effective date indicated in our notice. Your continued use of the Site after the effective date indicates your acceptance of the updated Terms, even if you have not reviewed them. If, at any time, you do not agree to the Terms, you should cancel your Subscription and stop using this Site.
18. Reservation of Rights.
Any and all rights, titles, interests, copyrights, or other intellectual property rights in the Site and Content belong to NPN or its licensors and suppliers. Except as expressly provided in these Terms, nothing contained herein shall be construed as conferring any license or right, by implication, estoppel or otherwise, under copyright or other intellectual property rights.
19. Governing Law and Exclusive Jurisdiction and Venue.
These Terms are governed by the laws of the State of Washington, without reference to its conflict of laws provisions. You expressly agree that exclusive jurisdiction and venue for any dispute relating to or arising from these Terms, the Site, or Content will reside in the State and Federal Courts of King County, Washington. The United Nations Convention on Contracts for the International Sale of Goods will not apply in any way to these Terms or to the transactions contemplated by these Terms.
20. AGREEMENT TO ARBITRATE; CLASS ACTION WAIVER; AND LOCATION OF DISPUTE RESOLUTION.
YOU AND NPN EACH AGREE THAT ALL CLAIMS AND DISPUTES ARISING OUT OF OR RELATED TO THESE TERMS, THE SITE, OR THE CONTENT WILL BE RESOLVED BY BINDING ARBITRATION BY A SINGLE NEUTRAL ARBITRATOR OR, IF THE CLAIM QUALIFIES, IN SMALL CLAIMS COURT IN THE EXCLUSIVE JURISDICTION OF KING COUNTY, WASHINGTON. YOU AND NPN EACH ALSO AGREE THAT THESE TERMS AFFECT INTERSTATE COMMERCE SO THE U.S. FEDERAL ARBITRATION ACT APPLIES INCLUDING WITH RESPECT TO ANY QUESTION OF WHETHER A CLAIM OR DISPUTE IS SUBJECT TO ARBITRATION (DESPITE THE CHOICE OF GOVERNING LAW IN SECTION 19). YOU AND NPN EACH AGREE TO ONLY PURSUE ARBITRATION ON AN INDIVIDUAL BASIS AND WILL NOT PURSUE ARBITRATION IN A CLASS, CONSOLIDATED, OR REPRESENTATIVE BASIS, REGARDLESS OF THE APPLICATION OF PROCEDURAL RULES BY ANY ARBITRATOR. IF ANY COURT OR ARBITRATOR HOLDS THAT THE CLASS ACTION WAIVER IS UNENFORCEABLE, THEN THE DISPUTE MUST BE BROUGHT IN THE EXCLUSIVE JURISDICTION OF THE STATE OR FEDERAL COURT IN KING COUNTY, WASHINGTON. YOU AND NPN EACH ALSO AGREE THAT FOR ARBITRATED CLAIMS THE ARBITRATOR’S AWARD WILL BE FINAL AND BINDING AND MAY BE ENTERED AS A JUDGMENT IN ANY COURT OF COMPETENT JURISDICTION. The American Arbitration Association (AAA) will arbitrate all disputes and the AAA’s Supplementary Procedures for Consumer-Related Disputes will apply. You and NPN each are responsible for your own respective costs relating to the arbitration, except that NPN will pay the arbitration administrative or filing fees, including the arbitrator fees. An arbitrator may award on an individual basis any relief authorized by law, including injunctive or declaratory relief and attorneys’ fees. If you want to arbitrate, to begin arbitration you must send a letter requesting arbitration and describing your claim to the contact listed for NPN in Section 16.
If any provision of these Terms is determined by a court of competent jurisdiction to be illegal, invalid, or unenforceable, the remaining provisions of these Terms will remain in full force and effect. Section titles are only for convenience and have no legal or contractual significance. NPN does not authorize access to or use of the Site or Content outside of the United States or Canada. NPN may assign these Terms, in whole or in part, at any time, with or without notice to you. You may not assign, transfer, or sublicense your rights, if any, in your Subscription. If, at any time, NPN fails to respond to a breach of these Terms by you or others, such failure will not waive NPN’s right to act with respect to subsequent or similar breaches. A waiver will only be binding on NPN if it is in writing and signed by NPN. These Terms (including any incorporated terms or policies) constitute the entire agreement between you and NPN with respect to your Subscription, the Site and Content. Both you and NPN warrant to each other that, in entering these Terms, neither NPN nor you have relied on or will have any right or remedy based upon any statement, representation, warranty, or assurance other than those expressly stated in these Terms. The preceding sentence will not limit or exclude any liability that cannot be limited or excluded under applicable law. No one other than you and NPN, or NPN’s successors and permitted assigns, will have any right to enforce any of these Terms.
For more information regarding these Terms or to alert National PKU News of any errors in the Content or on this Site, please email: firstname.lastname@example.org.
means National PKU News, A U.S.-based 501(c)(3) registered charity.
GDPR: means the General Data Protection Regulation.
Responsible Person: means Privacy Officer, reachable at email@example.com
Register of Systems: means a register of all systems or contexts in which personal data is processed by the Charity.
1. Data protection principles
The Charity is committed to processing data in accordance with its responsibilities under the GDPR.
Article 5 of the GDPR requires that personal data shall be:
- processed lawfully, fairly and in a transparent manner in relation to individuals;
- collected for specified, explicit and legitimate purposes and not further processed in a manner that is incompatible with those purposes; further processing for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes shall not be considered to be incompatible with the initial purposes;
- adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed;
- accurate and, where necessary, kept up to date; every reasonable step must be taken to ensure that personal data that are inaccurate, having regard to the purposes for which they are processed, are erased or rectified without delay;
- kept in a form which permits identification of data subjects for no longer than is necessary for the purposes for which the personal data are processed; personal data may be stored for longer periods insofar as the personal data will be processed solely for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes subject to implementation of the appropriate technical and organisational measures required by the GDPR in order to safeguard the rights and freedoms of individuals; and
- processed in a manner that ensures appropriate security of the personal data, including protection against unauthorised or unlawful processing and against accidental loss, destruction or damage, using appropriate technical or organisational measures.
2. General provisions
This policy applies to all personal data processed by the Charity.
- The Responsible Person shall take responsibility for the Charity’s ongoing compliance with this policy.
- This policy shall be reviewed at least annually.
3. Lawful, fair and transparent processing
- To ensure its processing of data is lawful, fair and transparent, the Charity shall maintain a Register of Systems.
- The Register of Systems shall be reviewed at least annually.
- Individuals have the right to access their personal data and any such requests made to the charity shall be dealt with in a timely manner. You may access your information within your account, or request that it be deleted from all systems by notifying firstname.lastname@example.org
4. Lawful purposes
- All data processed by the charity must be done on one of the following lawful bases: consent, contract, legal obligation, vital interests, public task or legitimate interests.
- The Charity shall note the appropriate lawful basis in the Register of Systems.
- Where consent is relied upon as a lawful basis for processing data, evidence of opt-in consent shall be kept with the personal data.
- Where communications are sent to individuals based on their consent, the option for the individual to revoke their consent should be clearly available and systems should be in place to ensure such revocation is reflected accurately in the Charity’s systems.
5. Data minimisation
- The Charity shall ensure that personal data are adequate, relevant and limited to what is necessary in relation to the purposes for which they are processed. For example, to process a subscription, we pass only the minimum data to our outside subscription and credit-card processing services.
- The Charity shall take reasonable steps to ensure personal data is accurate.
- Where necessary for the lawful basis on which data is processed, steps shall be put in place to ensure that personal data is kept up to date.
7. Archiving / removal
- To ensure that personal data is kept for no longer than necessary, the Charity shall put in place an archiving policy for each area in which personal data is processed and review this process annually.
- The archiving policy shall consider what data should/must be retained, for how long, and why.
- Users may request deletion of their data by emailing email@example.com
- The Charity shall ensure that personal data is stored securely using modern software that is kept-up-to-date.
- Access to personal data shall be limited to personnel who need access and appropriate security should be in place to avoid unauthorised sharing of information.
- When personal data is deleted this should be done safely such that the data is irrecoverable.
- Appropriate back-up and disaster recovery solutions shall be in place.
In the event of a breach of security leading to the accidental or unlawful destruction, loss, alteration, unauthorised disclosure of, or access to, personal data, the Charity shall promptly assess the risk to people’s rights and freedoms and if appropriate report this breach to the ICO.