From Regional Patient Advocate Javier Santana:
In February 2019 HAE Costa Rica held the first conference on HAE in the Medical Faculty of the University of Costa Rica. Attendees and speakers included medical professors, Costa Rican allergist specialists, HAE patients, government representatives, as well as medical students.
During the event, several patients described their experiences with HAE attacks, hospital misdiagnosis, failure in treatments, and the lack of effective therapies. Doctors discussed the disease state, symptoms and triggers, as well as the need for effective treatments. As a direct result of the participation of the Deputy Minister of Health of Costa Rica, the State Hospital was ordered to initiate/perform HAE relevant testing to identify patients with HAE.
Furthermore, I have been talking with several medical specialists to identify more HAE patients. I have also met with the new head of HAE Costa Rica and with several patients to discuss local strategies. Most recently, a patient contacted me through the new Facebook group, and I helped with contact with HAE Costa Rica.
The new head of HAE Costa Rica is Angie Leitón. She can be reached at moc.liamg@4961notiela and +506 8553 5295.
