From Regional Patient Advocate Javier Santana In Central America and the Caribbean, every day, there are more doctors interested in learning about Hereditary Angioedema (HAE) and how to help patients in their respective countries. New doctors in El Salvador and Costa Rica have been in communication with HAEi and me to find a way [...]
From RPA Javier Santana The situation regarding HAE medications continues to develop drop by drop. After a meeting held last year between the group of patients, rare disease patient associations from Costa Rica, the Minister of Health, the Medical Directors of the country’s main hospital, Government representatives, and myself, the entry of Berinert and icatibant [...]
From Regional Patient Advocate Javier Santana During recent months, many of the patient groups in the Central America and Caribbean region have worked hard to gain access to HAE drugs in their countries. Not least, patients from Costa Rica and Panama have held multiple meetings with government representatives seeking to finally achieve the acquisition [...]
From Regional Patient Advocate Javier Santana Much of my time has been concentrated on Costa Rica, where a young mother with HAE has been hospitalized several times due to severe crises. Unfortunately, the country’s main hospital has refused to purchase and provide one of the two treatments already authorized in Costa Rica to counteract [...]
From Regional Patient Advocate Javier Santana The patient group in Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics like new treatments, research, and COVID-19 vs. HAE. As a representative of HAEi, I gave a presentation on advocacy and the process of getting HAE medicines [...]
From Regional Patient Advocate Javier Santana In April, a follow-up was given to the survey that HAEi designed for my region in Spanish. The survey will help gather important information on the current situation related to HAE. All group leaders from the countries of the region participated in the survey. Chile held a virtual [...]
From Regional Patient Advocate Javier Santana In my region, there is still a shortage of medicines and treatments despite the efforts made by patient groups. In countries like Costa Rica, where in 2017 only about 18 patients had been identified, today about 80 people with HAE have been registered according to reports from allergy [...]
From Regional Patient Advocate Javier Santana Thanks to the cooperation with the consulting doctors of the patient groups in the Central American region, new doctors from Honduras and Nicaragua have been contacted. In both countries, patients with HAE have been identified, and the necessary efforts are being made to help them understand the disease, [...]
For several months, HAE patients in Costa Rica have conducted interviews with the media to denounce the situation they are experiencing as the Government has not heard their claims. Several patients have been hospitalized with severe HAE attacks, one has been intubated to save his life, and according to HAE Costa Rica, three patients [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Costa Rica Approx. 20 members at 1 Jan 2021 (the association registration is pending) Name of approved HAE treatments: Danazol Fun/interesting facts The food & gastronomy. The great variety of [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
