From Sandra Agustina Nieto-Martinez, HAE Mexico (AMAEH) On November 23, 2023, the Commission for Attention to Vulnerable Groups, chaired by Representative Gabriela Sodi and held in collaboration with the Mexican Association of Hereditary Angioedema AC (AMAEH), proposed in law to declare May 16 of each year as the NATIONAL HEREDITARY ANGIOEDEMA DAY and include [...]
From Regional Patient Advocate Fernanda De Oliveira Martins These past months, I’ve been pushing key initiatives for HAEi, raising awareness, supporting patient groups, and advocating for improved access to HAE treatment. Here’s a breakdown of my main contributions in the past few months: HAEi has developed a great tool to support Member Organizations (MO) [...]
From Regional Patient Advocate Fernanda De Oliveira Martins The 2024 HAEi Regional Conference Americas in Panama was amazing. It was a powerful source of inspiration for HAE patients, caregivers, and everyone involved with HAE. The conference equipped Member Organizations (MO) with knowledge, fostered collaboration, and empowered the MOs to continue their work and make [...]
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 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 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 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 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 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 [...]
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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