For rare-disease communities · Private preview
Anonymous by default. Found by choice.
If you live with a rare condition, you decide whether the right researchers can reach you, on your terms, with a receipt. No exposure you didn't choose. No data sold. Ever.
Rare-disease families are the most motivated to help research, and too often the most exploited by it. Your data ends up somewhere you can't see, shared with someone you never met. Xanadu flips that.
The north star
Xanadu is the place a person owns their data and decides everything that happens to it.
How it works for you
You hold the switch. The whole time.
You stay anonymous and no one can find you, until you decide otherwise. Silence is the starting point, not a setting you have to hunt for.
Choose to be findable for the specific research you care about. Turn it on for one study, turn it off anytime.
Every match and every use is logged for you to see. Revoke, and your data is deleted. No mystery, no middlemen.
The trust model rare-disease families have been waiting for: you choose who can find you, you see every use, and you can disappear again with one tap.
Paid, never sold
If you choose to help, you share in the value.
When you accept a study, only de-identified data is shared, and you keep 80% of what it pays (The 80/20 Payout™), one lease with an end date. No one buys your data, because no one owns it but you. Helping research and protecting your family are no longer a trade-off.
Why Xanadu is different
Anonymous until you say otherwise. Found by the researchers who need you most.
Most health apps keep your data on their cloud, on their terms. Xanadu keeps it on yours, until you decide who can see it, when, and for how long.
No one can find you or see your diagnosis until you choose otherwise. Silence is the starting point, not a setting to hunt for.
Load records from any provider, lab, or wearable, across your full history. Rare conditions deserve a complete picture, not a snapshot.
Every record normalized to FHIR, so your data is consistent, portable, and ready to help researchers when you do choose to share.
When you accept a study, PHI is stripped on your device first, HIPAA Safe Harbor, before anything leaves. You keep 80%. No exposure you didn't choose.
For foundations and research networks
Power research your community can finally trust.
Give the families you serve a consented, patient-controlled way to power research, without your organization ever holding their data or putting them at risk.
Members stay anonymous until they choose otherwise. You connect a channel, not a database.
Every family decides per study, sees every use, and can revoke. You bring trust; we keep it.
Connect motivated families to the researchers who need them, on terms families set themselves.
Why we build this
Because healthcare data failures hurt real families.
Our founder lost his wife seven days after she delivered their third daughter, because warning signs in her data never reached the people who could act. Rare-disease families carry that weight every day: desperate to help research, afraid of where their data goes. Xanadu exists so you never have to choose between the two.
Anonymous until you say otherwise.
Join the founding cohort. Be first to choose, on your terms, who can reach you, and help shape what we build.
Questions? Book a 15-minute call.