SCKIN Blog

From October 15 to 17, 2026, SCKIN took part in the Sickle Cell Disease Association of America's 54th Annual National Convention, at the Embassy Suites by Hilton, Charlotte Concord Golf Resort & Spa in Concord, North Carolina.

Our poster, What do people ask SickleCellPedia, an AI assistant for sickle cell disease?, by Zacharie Liman-Tinguiri, Dr Lewis Thomas and Matthew Agnello, looked at a sample of 1,925 messages that 434 people in 33 countries sent to SickleCellPedia on WhatsApp and the web between June 2025 and October 2026.

What we found

• The top three needs are complications (26% of conversations), understanding the disease (24%) and medicines (22%).
• Questions get personal. As conversations go on, people move from facts and medicine toward psychological and existential concerns. These make up 4% of first questions and 16% of questions from the fifth onward.
• Most people asking are living with the disease or caring for someone who is. Where people said who they were, 66% were patients and 29% family members or caregivers.

People ask an AI assistant questions they may not ask in clinic: sometimes out of shame, often because no expert is available when the question comes up. No patient can reach their doctor at any hour.

How we did it

SickleCellPedia users accept a privacy policy that covers research use. Conversations were anonymized before analysis, SCKIN's own test conversations were excluded, and an AI language model classified each question. These are preliminary, descriptive results from a sample.

SickleCellPedia for non-profit organizations

SickleCellPedia is available to non-profit organizations on a pay-what-you-can basis, so you can bring it to your members on your own platform. To get started, fill in the short form at sckin.org/scdaa. The same page has the poster and two ways to try SickleCellPedia, on the web and on WhatsApp.

Our thanks to the Sickle Cell Disease Association of America and to everyone who stopped by our poster.

SCKIN is in London this week for ASCAT 2026, held at Central Hall Westminster from 7 to 10 October.

On Thursday 8 October, Zacharie Liman-Tinguiri and Dr Lewis Thomas will present A specialized AI agent for sickle cell patient education in low-resource settings: a benchmarking evaluation.

• When: Thursday 8 October, 3:22pm to 3:34pm
• Where: Robert Perks Room, Central Hall Westminster
• Session: Oral Abstract Presentations: Healthcare Delivery & Innovation in Low and Middle-Income Countries (2:30pm to 4:30pm)

What we studied

People living with sickle cell disease increasingly turn to AI tools with health questions. We wanted to know whether a specialized agent answers those questions more safely than general-purpose models. We put the same sickle cell questions, in English and French, to SickleCellPedia and to leading general-purpose AI models, and asked a clinician to rate the answers without knowing which model wrote them.

The results we are sharing at ASCAT are preliminary. They come from a first round of ratings, and we are now recruiting more clinician evaluators to strengthen them.

Help us evaluate SickleCellPedia

If you are a clinician working in sickle cell disease, particularly in francophone or low-resource settings, we would value your help as an evaluator. Tell us you are interested, or simply get in touch, at sckin.org/ascat.

Our thanks to Réseau Erythrocytes et Drépanocytose (RED) for their collaboration on this work.

On July 23, 2026, SCKIN founder Zacharie Liman-Tinguiri was invited to speak at Warrior Con 2026 — the 13th Annual Sickle Cell Warriors Convention, hosted by the Sickle Cell Community Consortium at the Sheraton Gateway Los Angeles Hotel.

As part of the convention's "Sickle Cell Health & A.I." session, Zacharie presented Responsible AI Will Revolutionize Sickle Cell Care: how AI built responsibly — with medical rigor, transparency, and the community at the center — can put trustworthy sickle cell knowledge in the hands of warriors, caregivers, and clinicians everywhere.

Speaking directly with the warrior community about what responsible AI should look like is exactly the conversation SCKIN exists to have, and we're grateful to the Sickle Cell Community Consortium for the invitation.

• View the presentation slides
• Warrior Con 2026 conference agenda (PDF)

On Tuesday, April 21, 2026, SCKIN Executive Director Zacharie Liman-Tinguiri and Dr. Lewis Thomas, SCKIN's Director for User Experience, presented at the Sickle Cell Disease Coalition's Peer-Learning Exchange #5, a webinar held from 10:00 to 11:00 a.m. ET.

Their session, Can AI Be Trusted for Sickle Cell Disease Education? Introducing SickleCellPedia, used the development of SickleCellPedia as a case study for skills that transfer to any AI tool: how AI systems are trained and tested, why they sometimes produce incorrect or misleading information, and how to ask better questions to get more useful answers. They also discussed AI as a decision-support tool in healthcare — its strengths, its limits, and where it can appropriately support education and advocacy.

Helping the sickle cell community build the judgment to question and use AI well — not just use it — is exactly the conversation SCKIN exists to have, and we're grateful to the Sickle Cell Disease Coalition for the invitation.

The session was recorded, and the recording is now available to watch.