Brazilian healthcare startup Raras Health and Wikimedia Brasil have launched the Rare Knowledge initiative, which combines a WhatsApp AI assistant, scientific articles, SUS protocols, and Wikipedia page updates to improve access to data on over 10,000 rare diseases. The Ministry of Health estimates that around 13 million Brazilians live with a rare condition.
Between August 20 and 21, influencer Lito Sousa’s Portuguese Wikipedia page saw its views soar from 127 to 39,597 after he was diagnosed with Creutzfeldt-Jakob disease, an extremely rare neurodegenerative condition. During the same period, the article on the disease saw its views jump from 58 to 44,553. This surge highlights that for people living with a rare disease, finding reliable information can be just as challenging as getting a diagnosis.
The Rare Knowledge campaign combines AI, science, and open knowledge. At its core is a WhatsApp chatbot trained on information about over 10,000 rare diseases, 8 million scientific articles, and protocols from the Unified Health System. The tool helps patients, family members, and healthcare professionals research symptoms, treatments, rights, and reference centers without needing to install additional apps.
Why Wikipedia was included in the project
The partnership with Wikimedia Brasil exists because, despite growing research on rare diseases, knowledge remains scattered and often inaccessible to those who need it. The project will create and update Portuguese Wikipedia entries, including translations, scientific reviews, editing marathons, and workshops that connect healthcare professionals and students to the free knowledge ecosystem.
Érica Azzellini, president of Wikimedia Brasil, says: “Rare diseases are still underrepresented on the internet, and this gap has real consequences for patients, families, and healthcare professionals.”
The importance of Wikipedia for health
Health content on Wikipedia receives 4.8 billion views annually across all languages. According to Wikimedia, the platform is consulted by 50% to 70% of doctors and over 90% of medical students.
The initiative aims to tackle a large-scale problem. In Brazil, around 13 million people live with rare diseases, and the “diagnostic odyssey” can take an average of seven years to reach a conclusion.
Globally, the World Health Organization (WHO) 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 a partnership between Raras Health and Wikimedia Brasil that uses AI, scientific data, and open knowledge to improve access to information on over 10,000 rare conditions.
How does the AI assistant work? The assistant operates via WhatsApp, gathering information on rare diseases, scientific articles, and SUS protocols to help users find data on symptoms, treatments, rights, and reference centers.
What will the campaign do on Wikipedia? Portuguese articles on rare diseases will be created and updated, including translations, scientific reviews, editing marathons, and workshops with healthcare professionals.
Why is Wikipedia important for health information? Health articles on the platform receive billions of views annually and are a key resource for most doctors and medical students.
How many people are affected by rare diseases in Brazil? Around 13 million Brazilians live with a rare disease, and the search for a diagnosis can take an average of seven years.
Why did searches for Lito Sousa and Creutzfeldt-Jakob disease increase? After the influencer’s diagnosis, his Wikipedia article’s views rose from 127 to 39,597, while the disease’s page saw 44,553 views, up from 58 previously.
