01
Scope and definitions
This Privacy Policy describes what information we collect, how we use and share it, how we protect it, and your rights and choices.
Not a healthcare provider: FlarePath is not a healthcare provider, medical device, or HIPAA-covered entity.
HIPAA statement: HIPAA applies based on whether FlarePath is acting as a covered entity or business associate; it is not a general certification for every consumer health app. We use encryption, access controls and privacy-focused infrastructure to protect the information families record. Consumer health apps outside HIPAA may instead have obligations under the FTC’s Health Breach Notification Rule.
02
Data we collect and how we use it
2.8 Free-text and notes security guidance
FlarePath allows you to enter free-text notes in voice journals, symptom descriptions, and other fields. While we protect all data with encryption and access controls, we recommend:
- Do not include highly sensitive identifying information in free-text fields (e.g., full names of healthcare providers, specific addresses, Social Security numbers, insurance ID numbers).
- Use general descriptions rather than specific identifiers where possible
- Remember that free-text content may be reviewed by AI for structuring purposes
This guidance helps maintain an additional layer of privacy protection for your most sensitive information.
03
Data storage and security
04
How we share data
05
Research participation (optional)
FlarePath may invite users to contribute data to rare disease research. Participation is completely voluntary and opt-in only.
Two research pathways exist:
- Clinical trial participation: uses coded identifiers with controlled re-identification capability (ICH GCP-aligned)
- General research sharing: fully de-identified data for observational studies
5a
International users
FlarePath welcomes users from outside the United States. These conditions — CNO/CRMO — affect people worldwide, and we believe they should have access to quality symptom tracking and care management tools.
5b
Business model transparency
We believe you deserve to know how FlarePath operates and generates revenue.
Current model (Beta)
- FlarePath is currently free to individual users
- We believe patients and families should never have to pay to access and organize their own health information
- During Beta, we are funded by founder investment and grants
Future research revenue model
- If you consent to share de-identified data for research, FlarePath may receive licensing fees from research organizations
- These fees help cover our costs in maintaining the platform and preparing data for research
- FlarePath will only share data with researchers from users who have explicitly consented
Benefit sharing commitment
- We are exploring models to share a portion of research licensing fees with contributing users and patient advocacy organizations
- Any benefit sharing program will be transparent and disclosed in advance
- Participation in benefit sharing will be optional and will not affect your ability to use the app
- We will update this policy as benefit sharing models are finalized
What we will never do
- Charge users to access their own health data
- Require research participation to use the app
- Share identifiable data without explicit consent
- Sell data to marketers or advertisers
- Use Health Data for marketing or advertising purposes. We do not use personally identifiable health information for marketing, advertising, or promotional purposes under any circumstances.
Consequences of not providing data: you are not obligated to provide any Personal Data. However, if you choose not to provide certain information, we may not be able to provide you with some or all of our Services. For example, without account information we cannot create your account, and without health data we cannot generate symptom tracking insights.
06
Children’s privacy
FlarePath is intended for adults and caregivers acting on behalf of minors. Many of the conditions we support primarily affect children and adolescents, so this section is particularly important.
07
Your rights and choices
We want to make sure you are fully aware of all your data protection rights. You are entitled to the following:
| Right | Description |
|---|
| Right to Access | Request copies of your personal data and understand how it is used |
| Right to Rectification | Request correction of any information you believe is inaccurate or incomplete |
| Right to Erasure | Request deletion of your personal data, under certain conditions |
| Right to Restrict Processing | Request that we limit how we process your data, under certain conditions |
| Right to Object | Object to our processing of your personal data for specific purposes |
| Right to Data Portability | Request transfer of your data to another organization, or directly to you, in a machine-readable format |
| Right to Withdraw Consent | Withdraw consent for research or other optional processing at any time |
- Access a copy of your personal data
- Export your data in a standard electronic format (JSON, CSV)
- Correct inaccurate data
- Delete your account and associated data
- Delete specific voice recordings or all voice data
- Delete AI chat history
- Opt in or opt out of research participation
- Adjust granular sharing preferences for research data
To exercise these rights: email info@flarepathhealth.com.
Response timeline: within 30 days after identity verification (may be extended by an additional 30 days for complex requests, with notification).
Identity verification: for certain requests — particularly data access, deletion, or requests involving dependent profiles — we may need to verify your identity before fulfilling the request. Verification may include confirming access to the email address associated with your account, answering security questions, or for requests involving dependents: proof of legal authority.
Research consent withdrawals are processed within one (1) business day of receipt. Withdrawal prevents any new data from being shared with researchers. Previously shared de-identified data cannot be recalled from external researchers. Account deletion requests are processed within 30 days.
Appeal rights: if we deny any of your data rights requests, you have the right to appeal our decision. To appeal, contact info@flarepathhealth.com with “Appeal” in the subject line. We will respond to appeals within 30 days.
Non-discrimination: FlarePath will not discriminate against you for exercising any of your data protection rights. Exercising your rights will not affect your access to the app or quality of service.
08
Data retention
We retain your data only as long as necessary to operate the Service and comply with legal obligations:
| Data type | Retention |
|---|
| Active user data | Retained while your account is active |
| Voice recordings | Retained for quality improvement unless you request deletion; can be deleted at any time |
| Voice transcripts | Retained for quality improvement unless you request deletion; can be deleted at any time |
| AI chat history | Retained for quality improvement unless you request deletion |
| Clinical trial data | Retained per protocol-specific regulatory requirements (if you participate in trials) |
| General research data | De-identified; cannot be withdrawn from completed studies |
| Deleted accounts | Removed from production systems within 30 days; purged from backups within 90 days |
| Inactive accounts | May be deleted after 30 months total inactivity (no login for 18 months) unless otherwise requested |
| PHI disclosure records | Minimum 6 years as required by federal law, or longer if required by state law |
| Audit logs | Minimum 7 years for security and compliance purposes |
8a
Cookies and tracking technologies
09
Your state privacy rights
Residents of certain U.S. states have specific privacy rights under state law. This section applies to residents of California, Virginia, Colorado, Connecticut, and Texas.
10
Your responsibilities and consent
By using FlarePath, you acknowledge and agree that:
- You have the lawful right to submit any information you enter
- You will not enter another person’s health information without proper authorization
- Voice recordings and transcripts persist until you request deletion
- The app is for wellness tracking and information management — not diagnosis or treatment
- You understand the distinction between clinical trial participation and general research
11
Beta program terms
If you participate in the FlarePath Beta:
- Additional terms apply under the FlarePath Beta User Agreement (Version 2.7, effective January 16, 2026)
- Beta Agreement Section 12 distinguishes clinical trial participation (Section 12A: pseudonymized data with re-identification capability) from general research sharing (Section 12B: fully de-identified data)
- Beta data may be reset, migrated, or de-identified
- Features may be incomplete or experimental
- Functionality may change without notice
- The app is provided “as is” and may contain bugs
- Beta data is treated as non-clinical and will not be part of any medical record
12
Medical disclaimer
FlarePath is not a healthcare provider, diagnostic tool, or medical device. Information in the app is for wellness tracking and informational purposes only.
FlarePath does not monitor entries. If you or your child needs urgent care, contact your care team or call 911.
- Do not rely on FlarePath for diagnosis or treatment decisions
- Consult qualified healthcare professionals for medical questions
13
Changes to this policy
We may update this Privacy Policy as our services evolve.
If we make material changes:
- We will notify you by email and/or in-app notice
- The revised policy will include an updated Effective Date
- Continued use after notice means you accept the updated policy
You can view the current policy in the app under Menu → Legal.
14
Contact
FlarePath has designated a Privacy Officer to handle privacy questions and data protection requests.
Privacy Officer: Martin W. Walsh, Founder & Security Officer. Email: privacy@flarepathhealth.com.
General inquiries and access requests: info@flarepathhealth.com.
Security inquiries: security@flarepathhealth.com.
We will acknowledge privacy inquiries within 24 hours and provide a substantive response within 30 days. If we need additional time for complex requests, we will notify you.