Sickle cell care in Lusophone countries: proceedings from the 1st International Lusophone Specialists’ Alliance in Sickle Cell Disease (ALUA) Conference

Abstract Objectives Sickle cell disease (SCD), one of the most prevalent genetic disorders worldwide, remains a significantly neglected public health issue in Portuguese-speaking countries, despite an estimated 1 million affected individuals. To address it, the Lusophone Specialists’ Alliance in Sickle Cell Disease (ALUA) was established and organized the 1st International Conference on Sickle Cell Disease in Lusophone Countries. Held on June 19, 2024 and hosted by the CPLP in Lisbon, Portugal, the event brought together stakeholders from 7 countries to assess current challenges and define shared priorities for action and collaboration. Methods A structured survey was conducted among 29 participants involved in SCD care across 7 Lusophone countries. The questionnaire addressed diagnostics, treatment, workforce, registries, and policies. Its findings were presented to delegations from the Lusophone countries in attendance, discussing them along with other international recommendations. Results Findings revealed widespread disparities in newborn screening, treatment access, and specialist availability. Only Brazil and Portugal conduct universal newborn screening for SCD, while point-of-care diagnostics are beginning to improve early detection in other countries. Access to hydroxyurea is inconsistent, and blood transfusion safety varies. Participants from all countries reported a lack of trained professionals and SCD in medical curricula. Structured transition to adult care and national data systems are also missing in many contexts. Conclusion Conference attendants identified 3 shared priorities: raising awareness of SCD through education and advocacy; strengthening data, screening, and follow-up systems while acting without delay; and ensuring equitable access to essential care and context-adapted clinical guidance across the Lusophone world.