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 HAE Paraguay On February 27, 2024, in a meeting with the Minister of Health Maria Teresa Baran, together with FEPPER, Hereditary Angioedema Paraguay expressed the desire to urgently have specific medication, care protocol, diagnostic methods, reference centers, and assigned professionals for the treatment of HAE. Please enjoy the pictures from HAE Paraguay’s commemoration [...]
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 HAE Paraguay In 2023, HAE Paraguay managed to contact the Health Sciences Research Institute, the Instituto de Investigaciones en Ciencias de la Salud (IICS) of the National University of Asunción (UNA), specifically with researchers from the Department of Immunology. A project entitled “Study of the C1 plasma inhibitor in patients with and without [...]
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 [...]
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. [...]
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 [...]
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 [...]
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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