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 [...]
From HAE Brazil (Abranghe)We have produced some data from patients who sought out Abranghe for HAE registration and others for diagnostic guidance. The objective is to analyze data during the pandemic, from 2021 and 2020.
From Regional Patient Advocate Fernanda De Oliveira Martins We are planning to apply the Baseline Burden of Illness Study in Mexico to understand the patient situation in the country better and support them better. The translation and adaptation of the questionnaire is being made by the leader of HAE Mexico. The US HAEA has [...]
Short but sweet from HAE Brazil (ABRANGHE) Subcutaneous Berinert has been approved in Brazil for prophylactic treatment. It has been available for medical prescription to patients since 1 November 2021. >> Read more about available medication in Brazil on the country page for Brazil
From Regional Patient Advocate Fernanda De Oliveira Martins I keep encouraging leaders from the member organizations in my region to follow the HAEi Advocacy Academy exclusive courses – lately, I have been sending them information on course updates. I have supported Carla María Goachet Boulanger, President of HAE Peru, with some points regarding the [...]
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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Denmark
gro.ieah@ofni
