We welcome the new Member Organization in Chile, Corporación Angioedema Hereditario Chile. The President is José Ignacio Contreras Silva, and he can be contacted via moc.liamg@elihc.hea.noicaroproc as well as +56963373694. Also, you can find HAE Chile on both Instagram and Twitter.
From Regional Patient Advocate Fernanda De Oliveira Martins First of all, I would like to welcome José Ignacio Contreras Silva as the leader of the new Member Organization in Chile. In Spanish, the name is Corporación Angioedema Hereditario Chile – globally known as HAE Chile. The new group is getting to know the HAEi [...]
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 [...]
“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. [...]
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)
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HAE International (HAEi)
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