CareGene Inc. Privacy Policy

CareGene Inc. ("CareGene", "we", "our", or "us") is an independent, parent-led organization dedicated to empowering families managing rare genetic conditions. Unlike traditional health-tech firms, we are intentionally bootstrapped and mission-locked. We do not answer to venture capital boards; we answer to the families who trust us with their clinical narratives.

Personal Information:

Any data that identifies you or your child.

Clinical Narrative Data:

The longitudinal medical history, voice logs, and records you provide to create a cohesive clinical "movie".

The Services:

Our website, applications, and medical memory tools.

We collect only what is strictly necessary to turn fragmented snapshots into a continuous clinical story.

We use cookies and similar tracking technologies to enhance your experience and ensure the security of your "Vault."

• Session Cookies: These are temporary cookies that help us remember your preferences during a single browsing session.
• Security Cookies: These cookies help us detect and prevent unauthorized access to your "Vault."

We use your data exclusively to serve your family's care journey.

• Longitudinal Mapping: Organizing fragmented records into a searchable, AI-powered timeline.
• Brief Generation: Creating 1-page specialist summaries to improve clinical outcomes.
• System Integrity: Protecting the Services against fraud, abuse, and security breaches.
• Research Support: Supporting approved research studies (only with your explicit opt-in consent).

What we never do:

• We do not sell your personal or medical data to third parties.
• We do not use your data for pharmaceutical marketing or insurance profiling.
• We do not build marketing profiles based on your child's condition.

We implement healthcare-grade administrative and technical safeguards.

• Encryption: All data is encrypted at rest and in transit.
• Isolation: Your "Vault" is logically isolated from other users' data.
• Blue Light Philosophy: Our design system is optimized for your wellbeing, reducing blue light by up to 70% to support caregivers using the tool during late-night care.

CareGene is HIPAA compliant, with AES-256 encryption at rest and in transit, granular access controls, and full audit logs.

We maintain a policy of "Least Privilege" for data access.

CareGene uses advanced automated systems to help you navigate your data.

• No Public Training: Your data remains within your isolated environment and is never used to improve public-facing AI models.
• Source-Grounded Insights: Our AI is designed to cite specific medical records. If information is insufficient, the system is instructed to state "no data available" rather than guess.
• Not Medical Advice: CareGene provides a Medical Memory tool. We do not provide diagnoses or treatment recommendations.

CareGene may partner with advocacy groups, research institutions, and pharmaceutical sponsors to accelerate research into rare genetic conditions.

With your explicit, opt-in consent, we may share de-identified or pseudonymized Clinical Narrative Data for approved research studies.

You control:

• Which studies you participate in
• What data is shared (you can exclude specific records)
• When you revoke consent (you can withdraw at any time)

Research partners are contractually prohibited from:

• Re-identifying your data
• Using data for commercial marketing
• Sharing data with third parties without your permission

We will always disclose:

• The research sponsor (university, advocacy group, pharma)
• The purpose of the study
• What data will be shared
• How long the study will retain your data

Depending on your location, you may have the right to:

• Access and Portability: Request a copy of your full clinical timeline.
• Correction: Correct inaccuracies in your medical history.
• Objection: Opt out of specific automated processing.

To exercise these rights, contact legal@caregene.ai.

CareGene is a tool for parents and legal guardians. We do not knowingly collect information directly from children under 13 without verifiable parental consent. As a parent-led company, we handle children's data with the highest level of scrutiny.

We may transfer your data to third-party service providers located in countries outside of the United States. These transfers are made in accordance with applicable data protection laws, including the General Data Protection Regulation (GDPR) and the California Consumer Privacy Act (CCPA).

We ensure that any third-party service providers we use have appropriate data protection measures in place to protect your data. We also enter into data processing agreements with these providers to ensure that they handle your data in accordance with our privacy policy and applicable data protection laws.

We may update this Privacy Policy from time to time to reflect changes in our practices or for other operational, legal, or regulatory reasons. We will notify you of any material changes by posting the new Privacy Policy on our website and updating the "Last Updated" date at the top of this policy.

We encourage you to review this Privacy Policy periodically to stay informed about how we are protecting your data. Your continued use of the Services after any changes to this Privacy Policy will constitute your acceptance of the updated policy.

If you provide your mobile phone number and opt in, CareGene sends one-time security codes (one-time passcodes) by text message to verify your identity. This is a transactional, account-security program only.

• What we send: One-time verification codes. We do not send marketing or promotional text messages.
• Consent: You opt in explicitly before any text is sent, and your consent is not a condition of using CareGene. We keep a timestamped record of your opt-in.
• Message frequency: Varies — typically only when you request a code or sign in.
• Message & data rates: Standard message and data rates may apply, charged by your mobile carrier.
• Opting out: Reply STOP to any message to stop receiving texts; reply HELP for help. Carriers are not liable for delayed or undelivered messages.

How your number is used and shared: Your mobile number is used solely to deliver these security codes and is shared only with our SMS delivery provider (Twilio) for that purpose. We do not sell or share your mobile number or SMS opt-in consent with third parties or affiliates for their marketing.

For full details, see our SMS Terms.

For privacy inquiries or to discuss the Sentinel Pledge, please reach out: