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 [...]
There is a new member organization in Peru: The name is Asociación de Pacientes con Angioedema Hereditario del Perú, the President is Carla María Goachet Boulanger, and you can find her contact information at haei.org/hae-member-countries/peru. In Peru, the hae day :-) 2020 was celebrated already on 15 May with an online meeting with Dr. [...]
One more HAE Care Center has been added to the map of Peru: Hospital Nacional Guillermo Almenara. Please see https://haei.org/location/care-center-lima-peru.
From President Suzet Lam Torres, HAE Peru: After eight years, on 22 February 2019, the Regulation of the Law of Rare Diseases was promulgated, declaring treatment for people with rare diseases of national interest. The norm establishes the elaboration of a national plan of prevention, diagnosis, integral attention of health, treatment, rehabilitation, and monitoring 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)
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
