Privacy Notice for Patients & Caregivers

Last updated: October 22, 2026

NeuroVia is a personal care organizer for ALS and FTD patients and families, not a healthcare provider, official medical record or emergency service. No claim of HIPAA compliance is made. This notice explains data handling; it does not replace medical advice or establish a healthcare-provider relationship.

1. Scope and patient authorization

This notice applies to NeuroVia's website and home-screen web app. It covers account holders, patients and invited caregivers using the family care organizer. A clinician's or another service's privacy notice applies separately to that service.
Only enter or share someone else's health information when you have their permission or appropriate legal authority. Joining a care team does not itself establish legal authority to act for the patient. Share only information needed for care organization.

2. Information you provide

Account information includes your email and display name. Passwords are submitted to the sign-in service for authentication; NeuroVia does not store passwords in care records.
Your care team may enter patient details, appointments, medications and dose logs, clinic questions and answers, equipment information, emergency-card details, recording reminders, instructions and completion dates. Symptom notes are saved as written.
Instructional uploads include files, images, videos, links and their titles, provider names and notes. Uploaders must confirm that these materials do not show the patient or their health details; this confirmation is not automated content verification.
Stripe handles checkout and payment details. NeuroVia receives subscription and payment-related identifiers and status, not your full card number.

3. Operational information and local storage

Sign-in sessions use browser storage so you can remain signed in. Use sign-out on shared devices. Adding NeuroVia to your home screen does not create an offline copy of your care records.
Hosting and diagnostic services may process request, device/browser, network and error information to operate and troubleshoot the site. Error reports may include the page address and technical context. Team activity records track additions, changes and deletions. Avoid putting health details in page addresses or technical support messages.

4. How information is used

Information supports sign-in, shared care organization, reminders, educational materials, billing, security and troubleshooting.
NeuroVia does not sell your care records or use them for advertising. It does not continuously monitor symptoms, provide emergency alerts to clinicians or automatically send records to your healthcare provider.

5. Care-team access and sharing

Care records are organized by team, with membership-based access controls. Team owners manage invitations, roles and member removal; viewers have read-only access. Keep invite codes private and invite only people authorized to see the patient's information.
Team access means invited members can see shared records. Membership removal cannot retrieve information they already downloaded, printed, copied or photographed. Temporary file links can be used by anyone holding the link until it expires; do not forward them.
Hosting, sign-in, database and file-storage providers process information to run NeuroVia. Stripe processes payments. Disclosures may also be required by applicable law or lawful requests.

6. Patient recordings and educational materials

New patient symptom or assessment videos are recorded and saved outside NeuroVia using your device camera. NeuroVia stores recording reminders and completion metadata, not those new videos. Previously uploaded patient videos remain available for team review and deletion.
Educational materials are uploaded to team-restricted storage and may include instructional videos. They must not contain patient recordings or identifiable patient health information.
Your device recordings may sync to iCloud, Google Photos or another service depending on your settings. NeuroVia cannot manage those copies. Downloaded calendar reminders omit patient names and clinical notes; your calendar service handles imported events.

7. External services and communications

ClinicalTrials.gov receives the condition and optional location entered in a trial search. Avoid entering a patient's name or other identifiers. External resource, transportation and educational links open services with their own privacy practices; a link does not mean NeuroVia shares your entire care record with them.
The sign-in service sends account-related emails, such as confirmation and password-reset messages. Calendar reminders depend on the calendar you choose; NeuroVia does not automatically record patients or provide closed-app push alerts.

8. Retention and deletion limits

Saved care records generally remain until deleted. Subscription cancellation does not delete them. When paid access ends, member reads remain available and authorized editors can still delete data.
Deleting an item removes its active record when the operation succeeds. Files and their records require separate deletion steps. Backup, audit, diagnostic and payment records may have different retention requirements; a verified schedule for those copies is not stated here.
Account deletion is not the same as deleting shared team records. Deletion cannot remove copies held by other team members, your device, calendar or external service providers. Do not assume all copies have been permanently erased merely because an item no longer appears.

9. Your choices and requests

You can review and, with an editing role and current plan, correct care entries. Use an item's delete control to remove it when authorized. Team owners can manage member access and request team deletion on the Care Team page; account deletion is also available there, subject to ownership safeguards.
Cancel your subscription separately before deleting a team. Remove instructional files individually before team deletion; complete file cleanup after team deletion is not yet verified. Remove device videos and calendar events separately in the services where you saved them.
For access, correction, deletion or other privacy requests, contact privacy@neurovia.space. Rights and any identity or authority checks depend on applicable law. Do not email patient videos or detailed medical records with your initial request.

10. Security and incidents

NeuroVia uses sign-in, team permissions and temporary file links to restrict access. These safeguards do not guarantee security, end-to-end encryption or that no authorized service operator can access data. Protect your account, device and downloaded copies.
Report suspected unauthorized access to privacy@neurovia.space. Suspected incidents require investigation and containment; user and regulatory notices must follow applicable legal requirements. This notice does not promise a fixed containment deadline or establish that a particular breach-notification law applies to every incident.

11. Children, updates and contact

NeuroVia is intended for patients and authorized caregivers, not unsupervised use by children. When information concerns a minor or a person unable to consent, an appropriately authorized adult should manage it.
Changes to this notice will appear on this page with an updated date. Review it before using new features that process sensitive information.
Privacy contact: privacy@neurovia.space.