- 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.
- 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.
- 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.
- Third Party Links
- 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.
Last updated on April 19, 2022
- 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.
- We use third party technology platforms to provide services that help us carry out our mission:
- 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.
- 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.
- 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.
- 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.
- Compliance, Questions and Complaints.
Last updated on April 19, 2022