This input is dated May 2021 >> View content in Português In brief Name for organization: HAE Brazil 2117 members at 1 Jan 2021 Name of approved HAE treatments: Berinert Cinryze Firazyr Takhzyro Fun/interesting facts One of the 7 wonders of the modern world is in Brazil: [...]
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 [...]
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, [...]
Raquel de Oliveira Martins, President of HAE Brazil (ABRAGHE) writes that the pandemic has caused the cancellation of several scheduled activities. Therefore, the organization has taken the opportunity to produce some statistical tables on the HAE situation in Brazil.
2 March 2020 Fernanda de Oliveira Martins and Raquel de Oliveira Martins attended an event organized by Takeda called “A Blueprint for Success Brazil Summit”. There days later Raquel took part in the event “V Rare Disease Scenario”, also attended by the Brazilian first lady, Michele Bolsonaro. End April 2020, HAE Brazil (ABRANGHE) turned ten [...]
From Regional Patient Advocate Fernanda de Oliveira Martins I have held calls with member organization leaders in my region, which have been very successful. So far, the participants have included leaders from Brazil, Colombia, Mexico, Ecuador, Venezuela, Chile, and Paraguay. During the calls, we initiated the regional advisory group discussions and went through the Code of [...]
From Regional Patient Advocate Fernanda De Oliveira Martins I have held calls with member organization leaders in my region, which have been very successful. So far, the participants have included leaders from Brazil, Colombia, Mexico, Ecuador, Venezuela, Chile, and Paraguay. During the calls, we initiated the Regional Advisory Group discussions and went through the Code [...]
From Raquel Martins, President of Abranghe - Angioedema Hereditário Brasil, HAE International has received the very good news that Takhzyro (Lanadelumab) is now approved in Brazil for the treatment of HAE. The approval comes from the Brazilian Health Regulatory Agency (Anvisa), the coordinator of the Brazilian Health Regulatory System. 25-28 September 2019 Abranghe participated in and promoted HAE at the XLVI Brazilian [...]
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)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
