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.

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 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.

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

In the event that you choose to utilize our website to make a donation to us or register for one of our conferences, we will use a third party payment processor (Givebutter) 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. Givebutter will provide us with information such as time and date of transaction, your name and address, and any other information we need in order to record your donation, issue receipts, process your order, and provide you with the goods or services you purchased. You may wish to consult the Givebutter Terms and Privacy prior to providing them with personal information or completing any transaction.


As with most websites, our hosting provider (WordPress) 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 WordPress' collection, disclosure, storage, and use of your personal information in accordance with the privacy policy from their parent company, Automattic. Additionally, there may be forms on our website for you to submit information to participate in programs or services of the Glut1 Deficiency Foundation. That information is protected and will not be shared except with the individual performing the services you have requested.


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".


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.

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, we may share your conference registration details with a conference planner so name badges can be created, or we may share your application information with the person providing services you have requested through one of our programs (such as Keto Care Project or Bright Horizons Project).

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.

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, Givebutter, WordPress, Mailchimp, Discourse) have security standards in place for all private information we have stored on their platforms.

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.

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.


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.


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.

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 [email protected].

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 [email protected]. 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 January 12, 2024