Terms of Use and Privacy Policy

Terms of Use

The Glut1 Deficiency Foundation provides information and services available on our website subject to the following terms of use.  By using our website and communicating with us, you agree to be bound by these terms of use.
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  1. Privacy
    Please review our Privacy Policy below so that you will understand how we may collect and use your personal information.

  2. Information on our website
    We publish on our website information regarding Glucose Transporter Type 1 Deficiency Syndrome (Glut1 Deficiency), our organization’s activities and other information relevant to the Glut1 Deficiency community.  By using our website and communicating with us you acknowledge and agree that any information you may obtain from our website or from any communication that we may have with you is for informational purposes only and should not be substituted for informed and qualified medical care. We attempt to be as accurate as possible in providing information to our users; however we do not warrant that the information you obtain from us or our website is accurate, complete, reliable or current.

  3. Intellectual Property
    Content available on our website may be protected by U.S. and international copyright laws.  The logos displayed on our website belong to us or to third parties.  Content on our website may not be used, reproduced, sold, accessed, modified, or otherwise exploited for any commercial purpose without our prior written consent.

  4. Limited License
    We grant you a limited non-exclusive license to access and make personal use of our website. You may not, without our prior written consent, (i) use framing techniques to enclose our website or any portion of it; (ii) make any commercial use of our website or its content; (iii) create any derivative work based upon our website or its content; or (iv) use any meta tags or other hidden text containing our name.  You may create a hyperlink to the home page of our website for personal, non-commercial use only. A website that links to our website (i) may not imply that we are endorsing that website or its products or services; (ii) may not misrepresent its relationship with us; (iii) may not contain content that could be viewed as offensive, controversial or inappropriate for children; and (iv) may not portray us in a false, misleading, or objectionable manner, or associate us with undesirable products, services, or opinions.  If, in our sole discretion, we request that you remove any link to our website, you must immediately remove the link.

  5. Third Party Links
    We are not responsible for the content, products, or services in third party websites linked to our website. Links appearing on our website are for your convenience only, and are not an endorsement by us of the linked content. You should carefully review the terms of use of other websites that you visit.

  6. Contributions
    We welcome contributions of information, inquiries, feedback, suggestions, ideas or other content you may wish to provide us. Subject to the terms of our Privacy Policy, by contributing content to us, you hereby grant us a nonexclusive, royalty-free, perpetual, transferable, irrevocable, and fully sublicensable right to use, reproduce, modify, publish, translate, create derivative works from, and display the contributed content, alone or as part of other works.  If you contribute content to us, you represent and warrant that you own or otherwise control the rights to your content.

  7. Representations and Warranties; Limitation of Liability
    Our website is presented "as is".  We make no representations or warranties of any kind, express or implied, in connection with our website or its content, including but not limted to warranties of accuracy, non-infringement or fitness of a particular purpose.  To the maximum extent permitted  by law we will not be liable for any indirect, special, incidental, or consequential damages related to our website or its content, regardless of the form of action, whether in contract, tort (including negligence), or otherwise, even if we have been advised of the possibility of such damages.  
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  8. General
    You acknowledge and agree that these Terms of Use, together with our Privacy Policy, are the complete and exclusive agreement between us concerning your communications with us and your use of our website.  We may change these Terms of Use at any time and any changes will take effect immediately upon posting to our website. If you have any questions regarding these Terms of Use, please contact us by email at info@g1dfoundation.org.

Privacy Policy

The Glut1 Deficiency Foundation takes your privacy very seriously.  This Privacy Policy explains how we may collect and use your personal information when you interact with us, such as when you visit our website, correspond with us by email or phone, join our mailing list, register for our events or make a donation to us.  Please take a few minutes to read this policy to learn more about the types of information we may gather, how we may use your information and how we safeguard your information.

CONSENT:  By using our website and utilizing our services, you are accepting the policies and practices described in this Privacy Policy.  

  1. What information we collect and how we may use it.
    There are a number of situations in which we may collect information in order to enable you to communicate with us, to allow us to provide you with various services that you may request, to allow us to provide you with a better services or a better experience on our website, and to allow us to have insights into the needs and experiences of our community.

    The forms you may use to contact us or to sign up for our mailing list or an event sponsored by us allow you to provide us with your contact details as well as additional optional information about you and matters you may wish to communicate to us.  Information that you provide to us in this manner allows us to contact you with information that may be of interest to you, such as our newsletter or event updates.  Depending on the additional information you choose to provide, it may also help us to gain a better understanding of your interest in our organization and your needs as member of our community. 

  2. We use third party technology platforms to provide services that help us carry out our mission:

    Flipcause:
    In the event that you choose to utilize our website to sign up as a volunteer, to make a donation to us, or to purchase any goods or services from us, such as a registration for one of our periodic conferences or buying a product in our storefront, we will use a third party payment processor (Flipcause) to conduct the transaction.  We do not collect, process, or store payment information such as credit card numbers, expiration dates, banking information or similar types of transactional information. Flipcause will provide us with information such as volunteer details, products or services ordered, time and date of purchase, address, and other information we need in order to coordinate volunteer activities, record your donation or purchase and issue receipts, process your order, and provide you with the goods or services you purchased.  You may wish to consult the Flipcause Privacy Policy prior to providing them with personal information or completing any transaction.

    Weebly:
    As with most websites, our hosting provider (Weebly) gathers certain anonymous data and stores it in log files.  This type of data may include, by way of example, clickstream data, IP addresses, browser and operating system type, ISP referring and exit pages and time stamps.  We may use this anonymous information to analyze trends, to track users’ utilization of our site, to gather certain demographic information about our user base, to help us determine interest in particular topics and to measure how well we are communicating the information we provide on our website.  We do not use technologies that store information on your computer or enable us to identify you personally when you visit our website.  By using our website, you are also consenting to Weebly's collection, disclosure, storage, and use of your personal information in accordance with  the Weebly Privacy Policy.

    Mailchimp:
    We use an email service from MailChimp, which allows us to manage and segment contact lists and create campaigns to email important information that those on our contact list, Family Network, and Professional Network have opted to receive.  By signing up for our mailing list or networks or registering for our events, you are consenting to the MailChimp Privacy Policy and their collection, disclosure, storage, and use of your personal information as a "Contact". 

    Discourse:
    We use the Discourse platform for our private, closed discussion forums for the Family Network and the Professional Network.  Discourse provides a place to ask questions, share information, and receive support.  Access to the Family Forum will be granted to Family Network members, and access to the Professional Forum will be granted to Professional Network members. The Glut1 Deficiency Foundation will store a record of those who have signed up for the Networks and who have been granted access to the Discourse forums. We do not store logins or passwords to the Discourse platform.  Participation in and the information you choose to share on the Discourse forums is completely voluntary. We may analyze conversations in the forums to give insights into community issues and priorities, but this data will be collected anonymously and in aggregate form for our own personal use to better inform the services and programs of the Glut1 Deficiency Foundation and to help plan and drive the research agenda. By using the Discourse platform and our forums, you are consenting to the collection, disclosure, storage, and use of your personal information in accordance with the Discourse Privacy Policy.
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  3. Disclosure of your personal information.
    The Glut1 Deficiency Foundation will never sell website or other platform user data.  We will not share or disclose your personal information with or to any third party without your express consent, other than the information necessary to use the services of the third parties mentioned above (donations, registrations, or purchases through Flipcause, website use and Contact Forms through Weebly, email contact through MailChimp, and Discourse Forum use).  In certain circumstances, your consent for us to provide your contact details to other individuals involved in the work of our organization may be implied, such as when you volunteer to participate in one of our committees or when there is an individual performing services for the Foundation.  In that event we will limit any information that we disclose to information that is reasonably necessary to enable you and others to undertake these tasks.  As examples, we may share your email address with other members of a committee on which you have volunteered to serve so as to enable committee members to communicate with each other, or we may share your conference registration details with a conference planner so name badges can be created. 

  4. Control and integrity of your personal information.
    We offer you choices for the collection, use and sharing of your personal information, and we will respect the choices you make. You may notify us of your preferences, including any request that we remove your information from our database, by contacting us at the address set forth below.  You may also stop the delivery of our newsletters and regular mailings by clicking on the “unsubscribe” link at the bottom of each email.  We endeavor to keep your personal information accurate and up to date.  You have the right by contacting us to review and correct any personal information you have provided to us.  You can assist us in keeping your information up to date by informing us regularly of any changes.

  5. Security of your personal information.
    We are committed to protecting the security of your personal information. We use a variety of security technologies and procedures to help protect your personal information from unauthorized access, use, or disclosure.  For example, we store the personal information you provide on computer systems with limited access that are located in controlled facilities with proper security features that meet or exceed industry standards.  We also communicate and strictly enforce this privacy policy within our organization.  All third parties we use (Flipcause, Weebly, Mailchimp, Discourse) have security standards in place for all private information we have stored on their platforms. 

  6. Links to third party websites.
    Our site contains links to third party websites that may contain information of interest to our users.  We do not control these third parties, and we encourage you to consult their privacy policies prior to providing them with personal information.

  7. International Users.
    Personal information that we collect will be stored and processed in the United States, and by providing personal information to us, international users consent to the transfer of that information outside of their country. We will abide by the safe harbor framework as set forth by the U.S. Department of Commerce and the General Data Protection Regulation (GDPR) regarding the collection, use, and retention of data from the European Union.

  8. Children.
    We do not knowingly collect personal information from children under 13 years old.  If we discover that a child under 13 years old has submitted personal information to us, we will promptly delete that information.

  9. Updates.
    We may update this privacy policy from time to time, and any changes will take effect immediately upon posting to our website.  We encourage you periodically to review this policy to be informed of how we are protecting your personal information.

  10. Opting Out and Withdrawing Consent.  
    We may send you communications that are relevant to the personal information you have provided.  For example, if you have signed up for our mailing list, you will receive quarterly newsletter emails and other occasional special announcements.  If you no longer wish to receive these email updates, you may opt-out of receiving them by following the instructions included in each communication.  If you wish to withdraw your consent for the continued collection, use, storage, or disclosure of your personal information, please contact us with that request in writing by sending an email to info@G1DFoundation.org.

  11. Compliance, Questions and Complaints.
    We will periodically review and evaluate our compliance with this privacy policy.  If you have any questions or concerns about this policy or about how we collect, store and use your personal information, please contact us by email at info@G1DFoundation.org.  If we are unable to resolve your concerns directly, we will provide you with an effective method of obtaining an independent resolution.

Last updated on April 19, 2022