From Samantha Alvarado, HAE Guatemala

Guatemala does not yet have a fully implemented law on rare diseases, but in late 2024, several members of Congress introduced Initiative 6451, which seeks to create the Law for Comprehensive Care for Patients with Rare, Difficult-to-Diagnose, or Genetically Based Diseases. This effort is currently underway, having been referred to the Health and Social Assistance Committee for its review and corresponding report; however, its approval may take longer. As a group of patients with HAE, we have been working to schedule meetings with key individuals to help advance the initiative.

In Guatemala, as in some other Latin American countries, the main challenges are late diagnosis and the availability of specific therapies for HAE. Furthermore, approximately 44% of the population is indigenous, primarily belonging to Mayan, Garifuna, and Afro-descendant communities. Therefore, limited access to health services is often concentrated in urban areas, leaving indigenous communities with little coverage. Cultural and linguistic barriers exist: many Indigenous women and men face discrimination in hospitals and difficulties communicating in their own language. Hospitals typically use general therapies: corticosteroids and antihistamines, which are ineffective for HAE, are often used initially due to a lack of knowledge. Therefore, throughout 2025, we have been working together to continue raising awareness about Hereditary Angioedema in the country.