Privacy Policy

Effective Date: May 1, 2025

The Moebius Syndrome Foundation (“we,” “our,” or “us”) values the privacy of our donors, volunteers, supporters, members, and visitors to our website and the Moebius Connect mobile app (together, the “Services”). This Privacy Policy outlines how we collect, use, store, and protect your personal information across the Services.

This Privacy Policy should be read together with our Terms of Service, which govern your use of the Moebius Connect app.

1. Information We Collect

We may collect the following types of personal information:

• Contact Information: Name, email address, mailing address, phone number.
• Donation Information: Amount, payment method (e.g., credit card, check), billing information.
• Volunteer Information: Interests, availability, relevant experience.
• Event Registration: Name, contact information, preferences, and accessibility needs.
• Website Usage Data: IP address, browser type, pages visited (via cookies and analytics tools).
• Communications: Emails or messages you send us, including through in-app forms such as “Contact Us to Collaborate” or “Suggest a Provider.”
• App Usage and Analytics Data: When you use the Moebius Connect app, our app platform provider automatically collects a device or installation identifier and general usage activity (such as which sections of the app you visit) to help us understand how the app is used and to maintain its functionality.
• Community Map Location Information: If you choose to participate in the app’s community map feature, we collect the general location information you provide. This feature is optional, and participation is anonymous to other users.

2. How We Use Your Information

We use your personal information to:

• Process donations and provide tax receipts.
• Communicate with you about our programs, events, and updates.
• Manage volunteer opportunities and assignments.
• Operate, maintain, and improve the Moebius Connect app, including through analytics that help us understand app usage.
• Display general, anonymized community location information through the app’s community map feature.
• Comply with legal and regulatory requirements.
• Improve our website, app, programs, and services.

3. Sharing Your Information

We do not sell or rent your personal information.

Data Sharing

• Customer data is not shared with third parties for promotional or marketing purposes.
• Mobile opt-in and consent are never shared with anyone for any purpose. Any information sharing described elsewhere in this policy excludes mobile opt-in data.

Messaging Terms and Conditions

When you join our free membership, you have the option to list a phone number. By providing your phone number and agreeing to receive texts, you consent to receive text messages from Moebius Syndrome Foundation, from 844-663-2487, regarding member support. Consent is not a condition of membership. Message frequency varies. Message & data rates may apply. You can reply ‘STOP’ to unsubscribe at any time or ‘HELP’ for assistance. You can also contact us at 844-663-2487 or info@moebiussyndrome.org. Mobile opt-in information is never shared with third parties.

We may share your data with:

• Trusted third-party service providers (e.g., payment processors, email platforms, and our app development platform provider), only as necessary to perform services on our behalf. These providers are contractually restricted from using your information for their own purposes and are bound by data processing agreements consistent with applicable data protection law.
• Legal authorities, if required by law or to protect our rights.

All third parties are required to adhere to confidentiality and data protection standards.

4. Data Security

We implement appropriate technical and administrative safeguards to protect your data, including working with service providers who maintain industry-recognized security certifications. Despite our efforts, no system is completely secure. If a data breach occurs, we will notify you in accordance with applicable laws.

5. Your Choices

You have the right to:

• Access or correct your personal information.
• Request deletion of your information (subject to legal or operational requirements).
• Opt out of receiving communications from us by clicking “unsubscribe” in emails, “stop” in an SMS text message, or by contacting us directly.
• Request deletion of information collected through the Moebius Connect app by contacting us at the information below.

Depending on your state of residence, you may have additional rights under applicable state privacy laws. To exercise any of these rights, contact us using the information in Section 9 below.

6. Cookies, Tracking, and Analytics

Our website uses cookies to enhance user experience and track usage data. You can disable cookies in your browser settings, but some website features may not function properly. The Moebius Connect app uses analytics tools provided by our app platform to understand general usage patterns and improve app functionality. This analytics data does not include the content of your communications and is not used to sell or market to you.

7. Children’s Privacy

We do not knowingly collect information from children under 18 without parental consent. If we learn that we have unintentionally collected such information, we will delete it promptly. The Moebius Connect app is intended to be used by individuals with Moebius syndrome, their families, and caregivers, and portions of the app may be accessed by minors under the supervision of a parent or guardian.

8. Changes to This Policy

We may update this Privacy Policy from time to time. Any changes will be posted on this page and, where applicable, within the Moebius Connect app, with a revised effective date.

9. Contact Us

If you have any questions or concerns about this policy, please contact us at:

Moebius Syndrome Foundation
1312 17th Street, #976
Denver, CO 80202
+1 (844) 663-2487
info@moebiussyndrome.org

Welcome

 

© Copyright 2007–2026. The Moebius Syndrome Foundation. All rights reserved. Unauthorized copying, distribution, or modification of this content is prohibited. If you would like to add any of the Moebius Syndrome Foundation resources to your website, please contact info@moebiussyndrome.org for express permission. Photos from this website, the Moebius Connect app, or any Moebius Syndrome Foundation marketing materials and publications may not be replicated or used in any way without express written consent.