Data Protection Commitment

Privacy Policy

Effective Date: February 23, 2026

1. Introduction

The SCN1A Gain of Function Foundation ("we," "us," or "our") is committed to protecting the privacy and security of the families, researchers, and supporters who engage with our mission. This Privacy Policy outlines how we collect, use, and safeguard the information you provide, particularly through our Patient Registry.

2. Information We Collect

We collect information in two primary categories:

Personal Identifiers

Name, email address, physical address, and phone number provided when you join our mailing list, contact us, or register for the Warrior Network.

Clinical & Health Information (PHI)

When participating in the Patient Registry, you may provide sensitive health information regarding an affected individual, including:

Genetic variant details (e.g., p.Thr226Met)
Clinical symptom timelines (seizure onset, type, and frequency)
Medication history and pharmacological responses
Genetic testing reports and clinical summaries

HIPAA & Security Compliance Our data collection infrastructure for clinical information utilizes 256-bit encryption and is governed by a signed Business Associate Agreement (BAA) with our secure service providers to ensure HIPAA-compliant handling of Protected Health Information (PHI).

3. How We Use Your Information

We use your information strictly to advance the mission of the foundation:

Research Acceleration: Aggregating de-identified clinical data to help researchers understand the GoF phenotype.
Trial Readiness: Identifying potential cohorts for future clinical trials.
Foundation Updates: Communicating news regarding seed funding, research breakthroughs, and community events.
Advocacy: Using anonymized statistics to educate clinicians about GoF prevalence.

4. Information Sharing & Disclosure

We do not sell, rent, or lease your personal information to third parties.

In accordance with our "Open Science" policy, we may share de-identified, aggregated clinical data with approved research institutions to accelerate the path to a cure. No personally identifiable information (PII) is shared with researchers without your explicit, separate written consent.

5. Your Rights & Choices

You maintain full control over your data. You have the right to:

Request access to the information we hold about you.
Request corrections to any inaccurate data.
Withdraw your participation from the Patient Registry at any time.
Request the deletion of your personal identifiers from our systems.

6. Contact Us

If you have any questions regarding this policy or the security of your data, please contact our privacy coordinator at:

Email: info@scn1agof.org
Attn: Privacy & Data Security Team