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 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 [...]
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 [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Peru 46 members at 1 Jan 2021 Name of approved HAE treatments: Tranexamic acid Danazol (known as Danocrin) Kalbitor (known as ecallantide) Fun/interesting facts We are one of the countries [...]
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 [...]
First of all: We are moving towards adding Bolivia to the HAEi world map as Dr. Ariel Ramiréz has been registered as an HAE knowledgeable physician. You can find his contact information on haei.org. Furthermore, I am in contact with a woman who has both a brother, a sister and a mother with HAE [...]
Over the past few months, I have been working with the member organizations in my region and informing them about new resources like the Emergency Room Poster and the new HAE TrackR app. There has been a lot of work and communications on collecting information for the hae day :-) 10th anniversary campaign. [...]
From Regional Patient Advocate Fernanda de Oliveira Martins I organized a conference call for member organization leaders on 10 September 2020. Present were representatives from Argentina, Brazil, Chile, Ecuador, Mexico, Peru, Uruguay, and Venezuela. I have requested updated information on the number of patients, medication status etc., and at this point, I have received [...]
From Regional Patient Advocate Fernanda de Oliveira Martins COVID-19 has hit Latin America very hard. Unfortunately, many lives have been lost, including that of family members of people linked to HAE patient associations. In Mexico, more than 187,000 people lost their lives to COVID-19. In Brazil, the number is more than 120,000. In Peru, [...]
From HAE Peru (Asociación de Pacientes con Angioedema Hereditario del Perú): From Peru we want to inform you a brief summary of the most significant advances in favor of patients with HAE: In June of this year, after more than two years of having obtained the sanitary registration granted by the General Directorate 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)
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HAE International (HAEi)
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