Effective date: September 1, 2026

Who we are

ROCK Access Collaborative is an initiative of OPHN1 Foundation, a 501(c)(3) nonprofit organization. OPHN1 Foundation owns and operates rockinhibitor.org.

Information you provide to us

This website does not currently collect personal information through registration or account creation. If you contact ROCK Access Collaborative by email, we may receive information you voluntarily provide, such as your name, email address, organization, professional role, disorder or gene of interest, and information about your interest in participating in the Collaborative.

Please do not send medical records or sensitive health information through the general inquiry email address provided on this website.

How we use information

We may use information you provide to respond to inquiries, communicate about ROCK Access Collaborative activities, identify potential areas of scientific or nonprofit collaboration, and administer the Collaborative.

Website analytics and cookies

This website may use Google Analytics and related technologies to help us understand how visitors use the site, evaluate website performance, and improve our content and resources. These technologies may collect information such as browser and device information, pages visited, interactions with website features, and general usage information.

Your browser may allow you to control or block cookies through its settings.

Information sharing

OPHN1 Foundation does not sell personal information. We may use service providers that support website hosting, analytics, email, security, or other operational functions. Information may also be disclosed when required by law or when reasonably necessary to protect the security and integrity of the website or organization.

Third-party websites

This website may contain links to websites operated by third parties. OPHN1 Foundation is not responsible for the privacy practices or content of those external websites. Visitors should review the privacy policies of third-party sites they choose to visit.

Data retention

Information submitted through email or other communications may be retained for as long as reasonably necessary for the purposes for which it was provided, to maintain appropriate organizational records, or as required by law.

Your choices

You may contact us to ask questions about personal information you have voluntarily provided to ROCK Access Collaborative or to request that we update or delete that information, subject to applicable legal and record-retention requirements.

Medical information and educational content

ROCK Access Collaborative provides scientific and educational information and facilitates research and nonprofit collaboration. This website does not provide medical advice, diagnosis, or treatment recommendations.

Changes to this policy

We may update this Privacy Policy as the website and Collaborative evolve. The effective date above will be updated when material changes are made.

Contact us

Questions about this Privacy Policy may be sent to collaborative@rockinhibitor.org .