“Mi vida con AEH” (“My life with HAE”) is a new podcast from HAE Colombia which seeks to create awareness through the stories and experiences of the members. The aim is to motivate, help and support others through their first-hand experiences. >> Listen to the podcast on Spotify https://open.spotify.com/show/50za3BWFyLBzPSrJ3ihQCy?si=0--bHhMDQYumcFMaMlxhrw&utm_source=copy-link&nd=1
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 [...]
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 HAE Brazil (Abranghe) From January to August 2022, the number of diagnosed patients in Brazil has grown from 1,796 to 1,815. The number of members of HAE Brazil (ABRANGHE) has also increased during the same period – from 2,327 to the round figure of 2,400. Until recently, HAE patients in Brazil had access [...]
From Regional Patient Advocate Fernanda De Oliveira Martins We have all been excited looking forward to the Global Leadership Workshop in Frankfurt, Germany. The idea of bringing the leaders/board members of the HAE community together in a face-to-face meeting after so much time apart has added extra energy to our region. During the months [...]
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 [...]
We have registered the first HAE knowledgeable hospital in the country: Hospital Pediátrico “Niños de Acosta Ñu” in San Lorenzo. Also, there are two HAE knowledgeable physicians in Paraguay: Dr. Manuel Ratti Sisa and Dra. Susan Portillo, both located in San Lorenzo. Another piece of good news: Patients in Paraguay now have access to Firazyr. [...]
We welcome Bolivia as member country no. 94 in the HAEi global family. At the same time, we have registered the first two HAE knowledgeable physicians in the country. That is Dr. Ronald Palacios Castrillo in Santa Cruz de la Sierra and Dr. Ariel Ramírez in La Paz. >> Please find contact information on [...]
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 Fernanda De Oliveira Martins Very recently, we welcomed Bolivia to our global HAE family as two Bolivian patients are working on establishing a patient group. A group has already been created on Facebook >> please make sure to visit and like the page. Furthermore, HAEi is in the process 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
