Privacy Policy

SCN2A Foundation — a 501(c)(3) nonprofit organization / EIN: 92-2444780

Last updated: May 28, 2026

This Privacy Policy explains how the SCN2A Foundation (“we,” “us,” or “our”) collects, uses, shares, and protects information when you visit our website at scn2afoundation.org or otherwise interact with us. By using our website, you agree to the practices described in this policy.

Who We Are

The SCN2A Foundation is a patient-advocacy organization supporting families affected by SCN2A-related neurodevelopmental disorders, advancing research, and building community. Our legal entity name and mailing address are: SCN2A Foundation, 8 The Green STE B, Dover, DE 19901

Information We Collect

Information You Provide Directly

We collect personal information you choose to give us, which may include:

• Name and contact details (email address, phone number, mailing address)
• Information submitted when you sign up for our newsletter or registry
• Donation information (processed by a third-party payment processor)
• Messages or information you send through our contact forms or by email
• Health-related information you voluntarily provide through our patient registry, such as a diagnosis, variant type, or clinical history

Information Collected Automatically

When you visit our website, we automatically collect certain technical information, including your IP address, browser type and version, device identifiers, the pages you visit, and the dates, times, and duration of visits. We collect this through cookies and similar tracking technologies.

Cookies and Tracking Technologies

We use cookies and similar technologies to operate our website, remember your preferences, and understand how visitors use our site. You can set your browser to refuse cookies or alert you when cookies are being sent; however, some parts of our website may not function properly without them.

We use Google Analytics to help us understand website traffic and usage patterns. Google Analytics collects information such as how often users visit the site and what pages they view. You can learn about Google’s practices and opt out using the Google Analytics Opt-out Browser Add-on at tools.google.com/dlpage/gaoptout.

How We Use Your Information

We use the information we collect to:

• Operate, maintain, and improve our website and programs
• Send you newsletters, updates, and information about research, resources, and events (you may opt out at any time)
• Process and acknowledge donations
• Respond to your questions and requests
• Support research efforts through our patient registry, consistent with the consent you provide
• Comply with legal obligations and protect the rights and safety of our community

How We Share Your Information

We do not sell your personal information. We may share information in the following limited circumstances with your consent:

• Service providers: With third parties that perform services on our behalf, such as email delivery, analytics, payment processing, and registry hosting. These providers may access your information only to perform tasks for us and are obligated to protect it.
• Research partners: Registry information may be shared with qualified researchers or research platforms. Additionally, where you have provided explicit consent at the time of submission, your name, contact information, and form responses may be shared with named industry partners for the specific purpose described in that form, including participation in sponsored research, advisory boards, or patient engagement programs. We will only share your information for these purposes when you have affirmatively consented.
• Legal requirements: When required by law, court order, or valid government request, or to protect the rights, property, or safety of the Foundation, our community, or others.
• Compensation from third parties: In some cases, a third-party partner sponsoring a program or advisory board may provide compensation directly to participants. The SCN2A Foundation does not control, distribute, or take responsibility for compensation provided by third parties. Any such compensation arrangement will be disclosed to you at the time of enrollment.

Third-Party Services We Use

Email / Newsletter: Mailchimp. We use Mailchimp to manage and send our emails. See Mailchimp’s privacy practices at intuit.com/privacy/statement.

Donation Processing: Donations are handled by a third-party payment processor. We do not store or collect your full payment card details; that information is provided directly to the processor, which adheres to PCI-DSS security standards. GiveButter / Stripe.

Analytics: Google Analytics. See Google’s Privacy Policy at policies.google.com/privacy.

Patient Registry: Jotform.

Children’s Privacy

Our website and services are directed to adults. We do not knowingly collect personal information directly from children under 18. Information about a child affected by SCN2A is submitted by a parent, guardian, or other authorized adult. If you believe a child has provided us personal information directly, please contact us and we will take steps to delete it.

Data Retention

We retain personal information only as long as necessary for the purposes described in this policy, to comply with our legal obligations, resolve disputes, and enforce our agreements. Registry and research-related data are retained according to the terms of the consent you provided.

Data Security

We use commercially reasonable measures to protect your information. However, no method of transmission over the internet or electronic storage is completely secure, and we cannot guarantee absolute security.

Your Privacy Rights

Depending on where you live, you may have rights to access, correct, delete, or restrict the use of your personal information, and to opt out of marketing communications. To exercise any of these rights, contact us using the information below. You can unsubscribe from our emails at any time using the link in any message.

Because we serve families across the United States and beyond, certain state privacy laws (such as those in California) may give you additional rights. We honor verifiable requests as required by applicable law.

Links to Other Websites

Our website may contain links to sites we do not operate. We are not responsible for the privacy practices of those sites and encourage you to review their policies.

Changes to This Policy

We may update this Privacy Policy from time to time. We will post the updated version on this page and revise the “Last updated” date above. We encourage you to review it periodically.

Contact Us

If you have questions about this Privacy Policy or your information, please contact us:

• Through our contact page: scn2afoundation.org/contact
• By email: info@scn2afoundation.org
• By mail: 8 The Green STE B, Dover, DE 19901