Rare disease has been waiting on AI.AI has been waiting on us.

Cureledger. End rare disease.

Cureledger is the life data trust for rare disorders.

The moment

Rare diseases were always left behind by big pharma math.That changes now.

"For the first time in forty years, the limiting factor in rare disease drug development is the quality of the data we make available."

Drug development has always left rare disease behind. The science was never the barrier. The populations were too small for conventional pharmaceutical economics to reach, and the research labor was too expensive to spend on conditions that would never return it.

That has changed. AI can now do in an afternoon the hypothesis-testing work that used to take a hundred scientists a decade. The FDA has opened a regulatory path, the Plausible Mechanism Framework, for therapies designed for small populations and grounded in real patient data in place of the randomized trials our populations cannot support.

For the first time in forty years, the limiting factor in rare disease drug development is the quality of the data we make available. That data belongs to us. The decision to make it available on fair terms belongs to us too.

FDA comment on the Plausible Mechanism Framework →

Cureledger Life Data Trust

Your data. Held for you.
Working for you.

Protected

Working

Yours

Cureledger is a legal trust. You contribute your health data to the trust. A trustee holds it under terms you set and a fiduciary duty you can enforce. Qualified researchers access it on those terms. You share in the revenue your data produces.

When something the researchers find matters to you, whether a new therapy that fits your profile or a trial you qualify for, you find out. You choose in advance what you want to be told about and what you do not.

The data is de-identified before it ever leaves the trust. You hold the key to any re-identification. If a sponsor shuts down or an AI lab changes direction, your data stays in the trust and remains available for the next program that can use it, on your standing terms. No bankruptcy auction, no consent surprise, no second sale.

This is how the rare disease data economy should have worked from the beginning.

Changing the world

Because rare disease communities
have always had to do it ourselves.

Testing
Treatment
Legislation
Technology

Every major advance in rare disease has come from families, advocates, and independent researchers doing work the market refused to fund. Newborn screening was built by a microbiologist working with grieving mothers. Most approved rare disease therapies exist because a patient foundation raised the money, recruited the scientists, and wrote the check. The Orphan Drug Act passed because rare disease families lobbied it into law.

We are used to building what we need. Cureledger is the next thing we build, and this one compounds with every participant. Each family who contributes makes the system more valuable for the next family, the next program, and the next therapy. The value we create today becomes the evidence base that gets the next drug approved.

The rare disease community is the most motivated cohort in medicine. We are also the best qualified to build the infrastructure that finally serves us, because we are the only ones who will stay with it for the long run.

From the founder

Built by and for the rare disease community

Nina Kilbride

Founder & CEO, technology lawyer, software engineer, PKU parent

"I started Cureledger because my family needed it and nobody else was going to build it."

I started Cureledger because my family needed it and nobody else was going to build it.

I am a technology lawyer and a software engineer. My son has PKU. I spent a decade watching the drug development system work around rare disease instead of for it, and another decade building the infrastructure that makes working for it possible. I hold the patents. I have assembled a team of technologists, fiduciaries, and rare disease advocates who are in this for the same reason I am.

Cureledger is going to work because the people building it know, from their own lives, what is at stake if it does not.

Nina Kilbride, Founder