SCKIN
Our Mission
Our vision
A world where no one suffers from sickle cell disease for lack of knowledge that already exists.
Our mission
We aim to improve the lives of people living with sickle cell disease by making useful and reliable information about the disease universally accessible.
Our hypothesis
We believe the information gap drives the life-expectancy gap. Close the first, and the second begins to close.
What this looks like in practice
Four moments where the right knowledge, at the right time, changes everything.
The patient — knowing your own disease
Danielle, 24, lives in Houston and was recently told she should consider hydroxyurea. Her hematologist appointment is in six weeks and the internet is a wall of contradictory forum posts. She asks SickleCellPedia what hydroxyurea does, what the evidence says about side effects, and what questions to bring to her appointment. In ten minutes she goes from anxious guessing to informed preparation — with answers drawn from NHLBI and ASH guidelines, not Reddit. The knowledge was always in the guidelines; it just wasn't written for her.
The caregiver — the 2 a.m. question
It's the middle of the night in Dakar and Amina's six-year-old son has a fever of 38.9°C. She knows fever in a child with sickle cell can be an emergency, but is this one? On WhatsApp — the app she already uses every day — she asks SickleCellPedia. It tells her clearly: fever above 38.5°C in a child with SCD requires urgent medical evaluation, tonight, not tomorrow. She goes to the hospital. The rule that fever plus SCD equals emergency has been in pediatric protocols for decades. What changed is that it reached her at 2 a.m., in French, on her phone.
The health care professional — frontline support in an under-resourced setting
Dr. Okonkwo is a general practitioner in a district hospital in northern Nigeria. He sees perhaps a dozen sickle cell patients a month among hundreds of others, and there is no hematologist within 300 kilometers. A pregnant patient with SCD presents with worsening anemia. With SickleCellPedia Pro, he checks management guidance grounded in WHO and BSH guidelines, with citations he can verify. He is not replaced by the tool — he is backed by the same evidence base a specialist in London would consult. Penicillin prophylaxis and hydroxyurea are cheap and available; what's scarce is specialist knowledge at the point of care. That's the gap this closes.
The newly diagnosed family — the first week
Claire and Thomas, in Paris, have just learned through newborn screening that their daughter has sickle cell disease. Neither parent has it; they'd never heard the word "drépanocytose" before this week. In the gap between diagnosis and their first appointment at a specialized center, DrepanoPedia answers their first hundred questions — what this disease is, what it isn't, why penicillin will start soon, what her life can look like — in their language, at their pace, without judgment for asking the same question three times. The first week shapes a family's entire relationship with the disease. No one should spend it alone with a search engine.
These are illustrative scenarios based on the real situations our users face.
This is the world we're building.
Optional supporting prose for the Mission page can go here.