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 Raquel Fuentes, National contact of HAE El Salvador, continues to make efforts to educate about the existence of HAE and the treatments needed. She has visited hospitals and medical offices to talk about HAE as well as the existence of HAEi supporting patient groups globally.
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 [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE El Salvador 4 members at 1 Jan 2021 Name of approved HAE treatments: Danazol Fun/interesting facts Tourism. Food & gastronomy. Landscapes & places to visit. What positive changes [...]
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 [...]
From Regional Patient Advocate Javier Santana A European citizen will be temporarily relocating to El Salvador to participate in a student internship, and her parent inquired about available treatment and physician referral. The patient was directed to a knowledgeable physician in the country. I am continuing to provide support to the member organizations and HAE [...]
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 [...]
The website for the national group is now live, and the group wishes to use this for educational campaigns. A nurse in El Salvador is creating awareness of HAE by visiting allergy clinics and providing them with resources.
El Salvador has three HAE knowledgeable physicians – please see the HAE International map at https://haei.org/hae-member-countries/el-salvador. El Salvador now has a website under the HAEi wings - please see https://elsalvador.haei.org.
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
