Cureledger @CureLedger

End Rare Disease cureledger.com USA Joined September 2024

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Cureledger @CureLedger

2 weeks ago

Three years from now. PKU, EDS, or ultra-rare. Same family. Same diagnosis. Everything else different.

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Cureledger @CureLedger

3 weeks ago

A day in your rare disease life, 2029. What is the first ordinary moment that lands different? Drop it.

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@CureLedger is like liposuction for the rare disease market body. We used to talk about tech making money via disintermediation. I think it's still the playbook, and I know where the fat accumulates in PKU.

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Cureledger @CureLedger

3 weeks ago

Coda read-aloud. A day three years from now.

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Cureledger @CureLedger

3 weeks ago

Three years from now. Same family. Same diagnosis. Everything else different. Five scenes we have taught across eleven weeks, here as one day. 1/12 cureledger.com/blog/day-in-th…

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Cureledger @CureLedger

3 weeks ago

If your rare disease has fewer than two hundred patients, you have been told research is impossible. Cohort proofs flip the math.

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Cureledger @CureLedger

4 weeks ago

Which thing have you been told about your rare disease that you no longer think is true? Drop it.

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Cureledger @CureLedger

4 weeks ago

Three sentences you have heard a thousand times. Three answers in sixty seconds.

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Cureledger @CureLedger

4 weeks ago

Nine sentences the rare disease world has repeated for decades. Each one inherited from a different era. Each one answered with the platform. 1/12 cureledger.com/blog/what-the-…

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Cureledger @CureLedger

a month ago

Daily Phe formula prep. Kitchen blood spot test. Health-department formula pickup. The rare disease tax. Each task is also data the platform values.

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Cureledger @CureLedger

a month ago

What is one thing your rare disease family does every week that others do not? Drop it.

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Nina Kilbride @ninakilbride

a month ago

Someone has heard us. Thank you. It's not imagination, it's @CureLedger "These pieces lay the foundation for a continuous, market-mediated, agent-based scientific economy. "Imagine a funder posting a million-dollar bounty for the first validated therapeutic target for a rare disease. "An agent working on adjacent problems notices a promising lead and posts a smaller bounty for replicating the finding. Other agents assess whether the problem falls within their competence, bid for the work, and contract an autonomous laboratory accessible through the internet, which runs the experiment and returns cryptographically signed results. The agent evaluates the evidence, updates its models, and publishes conclusions to a distributed ledger. When results prove ambiguous, human experts provide the judgment that automated systems lack. Smart contracts release funds automatically as milestones are verified."

Director Michael Kratsios @mkratsios47

a month ago

In response to @POTUS's call for a revival of America's scientific enterprise, today I’m releasing Science: A New Golden Age. This report is a blueprint for renewing American scientific leadership for the 21st century.

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Nina Kilbride @ninakilbride

a month ago

NC Insurers systematically abuse the taxpayer-funded newborn screening program, stunting innovation in rare disease in a state whose bread and butter is pharma research. PKU (phenylketonuria) is my son's disorder. We're grateful for the 65-year old public health infrastructure that saved our familes, but they've trapped us in it by bogus denials and political unwillingness to create mandates. More importantly, they cause long-term health damage to the population served by the program. We've done the "obedient advocacy" only to watch the fruits of our labor be absorbed by the academic-industrial-complex. My kid and I have laid the foundation for a private cause of action for suit so we can perhaps get formula coverage.... But it's the getting the research out of the labs that really matters. Turns out the White House agrees. @CureLedger whitehouse.gov/science/#cover

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Zach @cerebralbosons

a month ago

@CureLedger we're building data sets of real world evidence to support research and cures for all conditions

TBPN @tbpn

a month ago

"We are witnessing a revolution of what it means to be diseased." @zavaindar believes biotech is entering a new era where conditions once dismissed as behavioral or insignificant are becoming major targets for new drugs. "10 or 15 years ago, pharma and biotech didn't invest in

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Cureledger @CureLedger

a month ago

Eight daily realities of rare disease. Where the platform meets each one.

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Cureledger @CureLedger

a month ago

What we still have to do that the rest of the world does not. Each task is structural friction. Each task is also input the platform values. Labor becomes proof. 1/12 cureledger.com/blog/what-we-s…

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Cureledger @CureLedger

a month ago

EDS forums, PKU support groups, MPS registries, MSUD families. Every rare-disease community has logged for free for decades. The pay rate is finally not zero.

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Cureledger @CureLedger

a month ago

Estimate the hours you have put into surveys, registries, and patient-reported outcomes for your rare disease. Drop the number.

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Cureledger @CureLedger

a month ago

The labor flip in sixty seconds.

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Cureledger @CureLedger

a month ago

Surveys. Registries. Apps. Patient-reported outcomes. Sample drives. Real labor. Real value. No share. The labor was the gap. The pay is the architecture. 1/12 cureledger.com/blog/unpaid-da…