We believe privacy has hindered the effective development of new treatments and shared understanding of how to manage disease. We’re embracing a new model founded on the belief that openness is a good thing. Please read our Openness Philosophy because it explains how we believe openness can save lives and improve care for everyone. It is at the core of who we are as a company.
Understanding privacy is important too. Our website can only work if we build trust with you, our patient members. Without the trust of our members, we would not be able to accomplish our mission to improve healthcare. Privacy is also a legal term and we have worked hard to develop a good policy. Like everything that is legal, the policy is long and has fine print, but we continually update it so it’s easy to read and understand.
Yes, we do. We create partnerships between you, our patients, and the companies that are developing products to help you. To do that, we take the information you entrust to us and sell it to the companies that can use that data to improve or understand products or the disease market. The personally identifiable information you share upon joining the site (like your name or contact information) is considered restricted and therefore not shared with partners. The data and text you enter in and around the shared parts of the site (e.g., on your profile, in the forum, symptom or treatment reports) may be shared or sold in aggregate to partners.
We also provide a voluntary opt-in service to allow partners to directly communicate with patient members through our system.
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