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.
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
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.
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.
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
Last updated on January 12, 2024