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 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 Sandra Agustina Nieto-Martínez, President of HAE Mexico: Veracruz is the first state of the Mexican Republic to implement a registry of patients with rare diseases as well as the policies necessary to provide patients with comprehensive diagnoses, medical care, and orphan drugs. The initiative of Deputy Yazmin Copete Zapot was unanimously approved by 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)
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
