From Wilfredo Bocaranda, President, HAE Venezuela HAE Venezuela held meetings with the Authorities of the Military Hospital with Doctors Guillermo Boggiano, Rommy Boggiano, and their medical team to analyze the case of patients in Venezuela and offer an alternative treatment. The request for treatment is managed by the High Cost unit of Social Security [...]
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 Fernanda De Oliveira Martins I am working with many countries in my region to support them in implementing some of HAEi’s wonderful tools and services. Chile has recently launched a “web2go” website. This solution is a quick process, free, and helps Member Organizations be more visible, increasing HAE awareness. You [...]
From Regional Patient Advocate Fernanda De Oliveira Martins It was amazing to be “Together Again” in Frankfurt, Germany, for the 2022 HAEi Global Leadership Workshop. I thank all the Member Organizations and the physicians from South America and Mexico for the effort and enthusiasm taken to the meeting, as well as the HAEi community [...]
I have been in contact with Lisa Facciolla from HAEA regarding the Brady Club. I’ve reached out to the member organizations in my region asking who are interested in receiving the kids’ material in Spanish. These countries have demonstrated interest: Argentina, Brazil, Chile, Colombia, Ecuador, Mexico, Paraguay, Peru, Uruguay, and Venezuela. I am coordinating [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Venezuela 4 members at 1 Jan 2021 Name of approved HAE treatments: Danazol Cyklokapron Fresh Plasma Fun/interesting facts Something funny always comes out of good or bad things and we [...]
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 [...]
First of all: We are moving towards adding Bolivia to the HAEi world map as Dr. Ariel Ramiréz has been registered as an HAE knowledgeable physician. You can find his contact information on haei.org. Furthermore, I am in contact with a woman who has both a brother, a sister and a mother with HAE [...]
From Regional Patient Advocate Fernanda de Oliveira Martins I organized a conference call for member organization leaders on 10 September 2020. Present were representatives from Argentina, Brazil, Chile, Ecuador, Mexico, Peru, Uruguay, and Venezuela. I have requested updated information on the number of patients, medication status etc., and at this point, I have received [...]
From Regional Patient Advocate Fernanda de Oliveira Martins I have had an online meeting with the President of Society of Allergies, Asthma and Immunology Dr. Joselit Torres and the President of HAE Venezuela Wilfredo Bocaranda. Topics discussed included identifying HAE and its treatments in crisis. Questions and concerns from patients registered with the foundation [...]
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
