Privacy Policy

Last Updated: August 3, 2026

At FOLLOWT1Ds.org ("we," "our," or "us"), we value your privacy and are committed to protecting the personal information you share with us. This Privacy Policy explains how we collect, use, and safeguard your information when you interact with our website.

1. Information We Collect

When you use FOLLOWT1Ds.org, we may collect the following information through forms and other interactions:

  • Personal Information You Voluntarily Provide:

    • Name

    • Email address

    • State and school district

    • Details shared through the "Share Your Story,” “Contact Us,” “Email My Lawmakers,” or “Request for Guidance” forms or other inquiries

    • Uploaded documents, images, or files

    • Your preferences regarding information sharing and support

  • Automatically Collected Information:

    • General website usage data (e.g., pages visited, time on site)

    • Basic technical information (e.g., IP addresses, browser type) collected for analytics and security purposes

  • 504 Accommodation Request Form Builder:

    • The Builder does not request or store names, student information, or completed forms. We may collect aggregate, non-identifying information about accommodation selections, edits, and print or PDF activity to understand trends and improve this resource.

    • If you choose to share revised or custom accommodation wording, we may store and review that wording for possible future updates. Please do not include names or other identifying information.

2. How We Use Your Information

The information collected helps us to:

  • Advocate for Change: Identify systemic issues and work collaboratively with lawmakers and other stakeholders to improve school policies and accommodations for students with Type 1 Diabetes (T1D) at the local, state, and national levels.

  • Support Our Community: Provide relevant resources and, when mutually agreed upon, facilitate introductions between parents, caregivers, or others who want to connect for support or advocacy collaboration.

  • Advocacy, Education, Research, and Awareness: We may use and share de-identified or aggregated information from submissions for advocacy, education, awareness, research, and communications. We do not publicly share identifying information about you or your child.

  • Improve Our Services: Use website analytics and aggregate, non-identifying Builder data to understand trends, improve our resources, and support our advocacy work.

  • Respond to Inquiries: Contact you based on your support preferences or if you request additional information.

  • Email Updates and Advocacy Communications: If you choose to sign up, we may use your email address to send important FOLLOWT1Ds advocacy updates, efforts, and opportunities.

3. Information Sharing

We respect your privacy and will only share your information as follows:

  • With Attorneys: If you express interest in filing a complaint or need legal guidance, we may share your information with pro bono attorneys who can offer general guidance but not legal representation.

  • With Other Parents or Advocates: In some cases, we may offer to connect parents, caregivers, or advocates who have expressed an interest in communicating or collaborating with others. We will only share contact information or make an introduction when the individuals involved agree to be connected.

  • With the Public (Anonymously): We may share de-identified or aggregated information, trends, statistics, and portions of submissions for advocacy, education, awareness, research, and communications. We do not publicly share information that identifies you or your child without your permission.

  • With your Lawmakers: If you choose to use our “Email My Lawmakers” tool, your message will be sent on your behalf using your email address as the reply-to. FOLLOWT1Ds does not intentionally retain the message body after transmission. Our email-service providers may temporarily process the message, delivery information, and technical logs as necessary to send, secure, and troubleshoot it.

  • With Service Providers: We use third-party providers that support website hosting and forms, analytics, email delivery, document storage, collaboration, security, and related operations. These providers may process information in accordance with their own privacy notices and our service arrangements. Examples currently include Squarespace, Google services, EmailJS, and Campaign Monitor.

  • No Unauthorized Sharing: We do not sell or rent your personal information. We do not share identifying personal information with third parties except as described in this Privacy Policy, with your permission, or as required by law.

4. Data Security

We take reasonable steps to protect your personal information. While we strive to use acceptable means to safeguard your data, no method of internet transmission or electronic storage is completely secure.

We retain personal information only for as long as reasonably necessary for the purposes described in this policy, our operational needs, or applicable legal requirements. Retention periods may vary depending on the type of information, how it was collected, and the settings and practices of our service providers. We do not guarantee a specific deletion schedule. You may contact us to request deletion of your information, subject to applicable legal, operational, security, and recordkeeping requirements. Aggregate or non-identifying information may be retained longer to understand trends and improve our resources.

5. Your Choices and Rights

You have control over how your information is used and shared. You can:

  • Access Your Data: Request a copy of the personal information we have about you.

  • Update or Delete Information: Ask us to correct or delete any personal information.

  • Change Sharing Preferences: Adjust your consent regarding how your story or personal information is shared.

  • Builder Sharing Choice: You can choose whether to share revised or custom accommodation wording with FOLLOWT1Ds. Choosing not to share wording does not prevent you from using the Builder or printing your form.

  • Unsubscribe from Emails: You may unsubscribe from email communications at any time using the link provided in the email.

To exercise any of these rights, contact us.

6. Cookies and Analytics

We use cookies and similar technologies for essential website functions, security, performance, and analytics, including Google Analytics. You can manage cookies through your browser settings.

7. Children’s and Students’ Privacy

FOLLOWT1Ds.org provides educational information that may be viewed by anyone, but our forms and interactive tools are intended for adults, particularly parents, guardians, educators, healthcare professionals, and advocates. We do not knowingly collect personal information directly from children under 13 without appropriate parental consent.

Parents, guardians, or other adults may choose to provide information about a student when sharing a story, requesting guidance, or contacting us. Please provide only the information reasonably necessary for your request. Do not submit a student’s full name, date of birth, home address, school identification number, medical records, or other identifying or sensitive information unless FOLLOWT1Ds specifically requests it through an appropriate secure method.

The 504 Accommodation Request Form Builder does not request or store a student’s name or completed 504 plan. Users should not enter identifying student information in custom accommodation wording.

If we learn that we collected personal information directly from a child under 13 without required consent, or received unnecessary identifying information about a student, we will take reasonable steps to delete it. A parent or guardian may contact us to request access to, correction of, or deletion of information concerning their child.

8. External Links

FOLLOWT1Ds.org may contain links to external websites, such as resources, media articles, or partners. We are not responsible for the privacy practices of these third-party sites.

9. Changes to This Privacy Policy

We may update this Privacy Policy periodically. Any changes will be posted on this page with an updated effective date.

10. Contact Us

If you have questions about this Privacy Policy or wish to request access to, correction of, or deletion of personal information, please use our contact us page. In your message, write “Privacy Request” and describe what you are requesting. To protect your privacy, we may ask for information reasonably necessary to verify your identity or your authority to make a request on someone else’s behalf.