From Regional Patient Advocate Javier Santana After the 2024 HAEi Regional Conference Americas, held in Panama in March, HAE patient advocacy groups in the Central American and Caribbean region continue to work enthusiastically to achieve their goals in each country. There will be a lot to discuss when we meet at the 2024 HAEi [...]
From Regional Patient Advocate Javier Santana HAEi delivered the first 2024 HAEi Regional Conference Americas in Panama City, Panama, where hundreds of patients, caregivers, doctors, and pharmaceutical representatives met to talk about advances of HAE in the Americas region, new treatments, and empowering patients, caregivers, and their families in the search for a better [...]
From Regional Patient Advocate Javier Santana In Central America and the Caribbean, every day, there are more doctors interested in learning about Hereditary Angioedema (HAE) and how to help patients in their respective countries. New doctors in El Salvador and Costa Rica have been in communication with HAEi and me to find a way [...]
From Regional Patient Advocate Javier Santana Much of my time has been concentrated on Costa Rica, where a young mother with HAE has been hospitalized several times due to severe crises. Unfortunately, the country’s main hospital has refused to purchase and provide one of the two treatments already authorized in Costa Rica to counteract [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Cuba 8 members at 1 Jan 2021 Name of approved HAE treatments: Danazol Tranexamic acid Berinert Cinryze Fun/interesting facts Beaches. The northern keys of the island. The Havana Carnival & [...]
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 [...]
During the past months, groups of people with HAE in the Central American and Caribbean region have been quite active in seeking the support of citizens and the attention of government entities to achieve access to treatments for HAE. Countries such as Panama and Costa Rica have held meetings with important government officials to [...]
The HAE International map has been updated with an HAE Care Center as well as an HAE knowledgeable physician in Cuba – please see https://haei.org/hae-member-countries/cuba.
From HAE patient Rosa María Perez: Epinephrine, Hydrocortisone, Prednisone, Benadryl ... with every health crisis there is a bombardment of medicines with which nothing is resolved. The edema was quick – “in crescendo” – until it reached a limit when it stopped, and then slowly began to decrease. Pediatricians and allergists agreed that it was an allergic process – allergy [...]
From Regional Patient Advocate Javier Santana: I have been in contact with a Cuban who is both a doctor and an HAE patient. He already knows of some other HAE patients in the country – and he is willing to lead a national organization in Cuba, identify more patients, educate about the disease, and identify [...]
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
