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 Digital & Social Media Manager Ianice Viel, US HAEA 2021 has continued to be an incredibly productive year for the US HAEA despite the ongoing pandemic-related challenges. As shown in the examples that follow, our programs, services, and activities continued to generate great enthusiasm and participation. 2021 US HAEA Virtual Summit Series: The [...]
From President Jacquie Badiou and COO Daphne Dumbrille, HAE Canada This fall HAE Canada hit the ground running. Our first task of the season was to present our poster titled, “Hereditary angioedema in Canada: Changes in medication use and untreated attacks between the 2017 and 2020 surveys” at the Canadian Society of Allergy and [...]
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 [...]
From President Jacquie Badiou and COO Daphne Dumbrille, HAE Cananda: Over the summer, we received the news that our abstract titled “Hereditary angioedema in Canada: Changes in medication use and untreated attacks between the 2017 and 2020 surveys” was accepted to the Canadian Society of Allergy and Clinical Immunology (CSACI)’s Annual 2021 Scientific Virtual [...]
From Ianice Viel, Digital & Social Media Manager, US HAEA: 2021 US HAEA Virtual Summit Series: In light of the COVID-19 restrictions, the HAEA reimagined and designed an innovative alternative to the in-person Summits we had held every other year over the past two decades. The 2021 US HAEA Virtual Summit featured four live [...]
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 In brief Name for organization: US Hereditary Angioedema Association 10,000 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Cinryze Firazyr Haegarda Kalbitor Orladeyo Ruconest Takhzyro Fun/interesting facts The United States has the fourth longest river system in the world. [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Mexico 300 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Firazyr Kalbitor Takhzyro Tranexamic acid Danazol Fun/interesting facts The celebration of the Day of the Dead is [...]
This input is dated May 2021 In brief Name for organization: HAE Canada 496 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Firazyr Cinryze Haegarda Takhzyro Tranexamic acid Fun/interesting facts Insulin was discovered in 1921 by Frederick Banting, a Canadian doctor at the University 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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Denmark
gro.ieah@ofni
