The Rare Knowledge Campaign combines AI, Wikipedia, and healthcare to improve access to information on rare diseases

Raras Health and Wikimedia Brasil have launched the Rare Knowledge initiative, which aims to improve access to information on over 10,000 rare diseases. The initiative combines an AI assistant on WhatsApp, scientific articles, protocols from Brazil’s Unified Health System, and updates to Portuguese Wikipedia entries.

The Ministry of Health estimates that around 13 million Brazilians live with a rare condition, and diagnosis can take an average of seven years.

How the AI tool works

The campaign’s technological core is a WhatsApp chatbot trained on data from over 10,000 rare diseases, 8 million scientific articles, and SUS regulations. The assistant allows patients, family members, and healthcare professionals to search for symptoms, treatments, rights, and reference centers without needing to install additional apps.

As a doctor who treats people with rare diseases, I’ve seen many people suffer the consequences of a late diagnosis. Providing quality information about different cases, with an AI agent that helps connect the dots between similar diseases, is an innovative way to bring information to those seeking answers, empowering people in their own journey — Alexandre Kawassaki, doctor and co-founder of Raras Health.

Why Wikipedia was chosen

The partnership with Wikimedia Brasil stems from the realization that, despite growing research on rare diseases, knowledge remains scattered and inaccessible to those who need it. The initiative will create and update Portuguese Wikipedia entries, including translations, scientific reviews, editing marathons, and workshops that connect professionals and students to the free knowledge ecosystem.

We face a global scenario of decentralized information about rare diseases. This hinders diagnosis time and, consequently, treatment. Raras works to centralize and integrate all this knowledge — Dimas Timmers, CEO and founder of Raras Health.

Rare diseases are still underrepresented online, and this gap has concrete consequences for patients, families, and healthcare professionals — Érica Azzellini, president of Wikimedia Brasil.

Impact and reach

In August, after influencer Lito Sousa disclosed his diagnosis of Creutzfeldt-Jakob disease, his Wikipedia page jumped from 127 to 39,597 views in one day, while the disease’s page went from 58 to 44,553 views. This surge highlights the difficulty patients face in finding reliable information.

Health content on Wikipedia receives 4.8 billion views annually across all languages. The platform is consulted by 50% to 70% of doctors and over 90% of medical students.

Globally, the World Health Organization estimates that over 300 million people are affected by one of the more than 7,000 existing rare diseases.

Frequently Asked Questions

What is the Rare Knowledge campaign? It’s an initiative by Raras Health and Wikimedia Brasil that combines artificial intelligence, scientific data, and open knowledge to improve access to information on rare diseases.

How does the AI assistant work? The WhatsApp chatbot aggregates information on over 10,000 rare diseases, 8 million scientific articles, and SUS protocols, helping users find data on symptoms, treatments, rights, and reference centers.

What will the campaign do on Wikipedia? Portuguese entries on rare diseases will be created and updated, including translations, scientific reviews, editing marathons, and workshops with healthcare professionals and students.

Why is Wikipedia important for health information? Health articles on the platform receive 4.8 billion annual views and are consulted by most doctors and medical students.

How many people live with rare diseases in Brazil? Around 13 million Brazilians are affected by a rare disease, and finding a diagnosis can take an average of seven years.

Why did searches for Lito Sousa and Creutzfeldt-Jakob disease increase? After Lito Sousa announced his diagnosis, both his page and the disease’s page saw a significant increase in views in a short period.