From Costa Rica

Throughout 2025, patients with Hereditary Angioedema in Costa Rica have been working together to advance awareness of the disease. In our country, Law 10.550, PREVENTION AND COMPREHENSIVE HEALTH CARE FOR PEOPLE WITH RARE DISEASES, TO IMPROVE THEIR QUALITY OF LIFE AND THAT OF THEIR FAMILIES, was recently passed, and Hereditary Angioedema is included in this law. This has been a significant step forward because, like other rare diseases, we could receive more support and care in the future.

As part of our efforts, we have held events with pharmaceutical representatives to learn more about the medications available in Costa Rica and their effectiveness for patients. We have also held meetings with other important patient organizations in the country, such as ANASOVI and the World Rare Disease Day Network Organizing Committee, to validate the inclusion of Hereditary Angioedema (HAE) in Law 10.550. They provided guidance on government procedures and how the new law will function, and both organizations offered their support and advice on any future issues.

Additionally, we successfully lobbied for the issuance of ID cards so that people with HAE can present them during emergencies at hospitals and health centers throughout the country. We have also held fundraising events, raising the necessary funds to finally legally establish the Costa Rican Angioedema Association.

To better focus on our short- and long-term goals, we are holding bi-weekly meetings for the first time with patients and the Board of Directors created by the patients, as well as meetings with the representative of the Hereditary Angioedema International Patients’ Organization (HAEi) for Central America and the Caribbean. We have also established communication plans with legal representatives to consolidate the Costa Rican Patients Association, and communication with medical specialists in HAE in Costa Rica.