Information We May Collect

OPHN1 Foundation may collect information that visitors voluntarily provide through contact forms, surveys, email communications, donations, event registrations, community activities, and other interactions with the Foundation.

This information may include:

• Name and contact information
• Information submitted through forms, surveys, or email
• Information relating to OPHN1, health, genetics, family experiences, or research interests
• Photographs, stories, comments, or other materials voluntarily submitted
• Donation or transaction-related information
• Other information a visitor chooses to provide

The website and services used by the Foundation may also collect technical information such as IP address, browser type, device information, referring pages, pages visited, and general website usage.

How Information May Be Used

Information may be used to:

• Respond to inquiries and requests
• Provide Foundation news, resources, and updates
• Support and connect members of the OPHN1 community
• Understand community interests and priorities
• Develop educational, research, advocacy, fundraising, and community activities
• Communicate research, registry, survey, study, or participation opportunities
• Operate and improve the website and Foundation activities
• Meet legal, administrative, or operational needs
• Support other lawful activities consistent with the Foundation’s mission

Sharing of Information

Information may be shared when reasonably related to the Foundation’s mission, activities, operations, or legal obligations. This may include sharing with Foundation representatives, volunteers, contractors, service providers, researchers, clinicians, registries, nonprofit partners, professional advisors, or other collaborators.

Information may also be used or shared in aggregated, summarized, statistical, anonymized, or de-identified form.

OPHN1 Foundation does not currently sell personal information as part of its ordinary charitable activities.

Health and Research Information

OPHN1 Foundation is a nonprofit patient advocacy organization and is not generally acting as a healthcare provider, health plan, medical records custodian, or research institution.

Information voluntarily submitted to the Foundation may not receive the same legal protections as information maintained by a healthcare provider, research institution, or formal patient registry.

Submitting information through this website does not by itself enroll an individual in a research study, clinical trial, patient registry, or medical program unless expressly stated.

Third-Party Services

This website may use or link to third-party services, including survey platforms, donation processors, email providers, analytics services, social-media platforms, patient registries, and research organizations.

Information submitted directly to a third party is subject to that party’s terms and privacy practices. OPHN1 Foundation does not control the privacy, security, availability, or practices of third-party websites and services.

Information About Minors

Information concerning a minor should be submitted only by a parent, legal guardian, or other person authorized to provide it.

Security

No website, email communication, electronic transmission, or information-storage system can be guaranteed to be completely private or secure. Information submitted electronically is provided at the submitter’s discretion.

Communications

The Foundation may use contact information voluntarily provided to communicate about its mission, activities, resources, fundraising, surveys, research opportunities, events, or other programs.

Recipients may use an available unsubscribe option or contact the Foundation to request removal from general email communications.

Changes to This Policy

OPHN1 Foundation may update this Privacy Policy from time to time. Changes become effective when the revised policy is posted on this website.

Contact

Questions regarding this Privacy Policy may be directed to:

OPHN1 Foundation
Email: info@ophn1.com
Website: ophn1.com