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 [...]
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 [...]
I participated in an interview with Dr. Olga Barrera in Panama for a national newspaper to highlight HAE patients’ situation in the country. In Puerto Rico, I have had several communications with Dr. Rafael Zaragoza, representatives of pharmaceutical companies, lawmakers, and legislative advisers about the reconsideration of the law that would give HAE patients [...]
From Regional Patient Advocate Javier Santana During the month of December, we are hosting another webinar in Spanish with Dr. Rafael Zaragoza on HAE and COVID-19 in order to update the HAE community from the region on the latest medical information. We expect this event will be well attended. We are also excited that [...]
From Regional Patient Advocate Javier Santana: I have held discussions with a pharma company from Costa Rica who wishes to introduce a generic HAE treatment to Costa Rica, Guatemala, and Peru. The company is currently engaged in discussions with doctors in these countries. The first National Forum of Rare Diseases in Costa Rica was held [...]
From Regional Patient Advocate Javier Santana I have held discussions with a pharma company from Costa Rica who wishes to introduce a generic HAE treatment to Costa Rica, Guatemala, and Peru. The company is currently engaged in discussions with doctors in these countries. A European citizen will be temporarily relocating to El Salvador to participate [...]
From Regional Patient Advocate Javier Santana: Costa Rica has had its 1st Costa Rican Allergy Congress where Dr. Mario Martínez, who helps the group of HAE patients in the country, offered a comprehensive presentation on HAE to all attending physicians.
Costa Rica has also opened a website under the HAEi umbrella - please visit https://costarica.haei.org. An HAE knowledgeable hospital has been added to the map of Costa Rica - please see https://haei.org/location/hospital-san-jose-costa-rica.
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 [...]
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
