From HAE Panama During the celebration of the Central American and National Congress of Otorhinolaryngology, held in Panama, 16-18 November 2023, the topic of HAE was addressed by Dr. Olga M. Barrera, medical advisor of the Panamanian Association of Patients with HAE, which motivated a lot of interest among those attending that specialty. [...]
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 Regional Patient Advocate Javier Santana Since 2022 the group of patients and HAE specialist doctors have held multiple meetings with government officials to discuss the shortage of HAE medicines. Despite the constant promises to resolve the situation of drug shortages, the Panamanian government still evades its responsibility to provide patients with HAE with [...]
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 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 Panama 18 members at 1 Jan 2021 Name of approved HAE treatments: Ruconest – registered, but we don’t have access yet Fun/interesting facts Great weather. Happiness of the People. Beautiful [...]
The biannual HAE Global Conference has been an excellent opportunity for people with HAE to meet, exchange experiences, and learn from each other over the years. Following the 2018 HAE Global Conference in Vienna, Austria, organizing a workshop for fellow Latin American patients was a must. Originally the plan was to hold the first-ever [...]
During the past months, groups of people with HAE in the Central American and Caribbean region have been quite active in seeking the support of citizens and the attention of government entities to achieve access to treatments for HAE. Countries such as Panama and Costa Rica have held meetings with important government officials to [...]
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
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HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
