From HAE Puerto Rico The Immunology and Allergy Association of Puerto Rico had an annual congress where the HAE topic was part of the agenda. Many doctors made some presentations and talked about the efforts, new treatments, and studies about HAE. Prof. Marc Riedl, Clinical Director, US HAEA Angioedema Center in San Diego, California, [...]
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 [...]
HAE Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics such as new treatments, research, and COVID-19 vs. HAE. The main speaker and special guest was Dr. Marc Riedl from the US HAEA Angioedema Center. Among the other speakers were Dr. Anardi Agosto, President of the [...]
From Regional Patient Advocate Javier Santana The patient group in Puerto Rico has held its annual conference where HAE specialist doctors had the opportunity to talk about topics like new treatments, research, and COVID-19 vs. HAE. As a representative of HAEi, I gave a presentation on advocacy and the process of getting HAE medicines [...]
From Regional Patient Advocate Javier Santana In my region, there is still a shortage of medicines and treatments despite the efforts made by patient groups. In countries like Costa Rica, where in 2017 only about 18 patients had been identified, today about 80 people with HAE have been registered according to reports from allergy [...]
From Regional Patient Advocate Javier Santana Thanks to the cooperation with the consulting doctors of the patient groups in the Central American region, new doctors from Honduras and Nicaragua have been contacted. In both countries, patients with HAE have been identified, and the necessary efforts are being made to help them understand the disease, [...]
This input is dated May 2021 >> View content in Español In brief Name for organization: US Hereditary Angioedema Association 10,000 members in total at 1 Jan 2021 (the association registration is pending), 103 members in Puerto Rico Name of approved HAE treatments: Berinert Cinryze Firazyr Kalbitor Ruconest Takhzyro [...]
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 [...]
I participated in an interview with Dr. Olga Barrera in Panama for a national newspaper to highlight HAE patients’ situation in the country. In Puerto Rico, I have had several communications with Dr. Rafael Zaragoza, representatives of pharmaceutical companies, lawmakers, and legislative advisers about the reconsideration of the law that would give HAE patients [...]
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
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HAE International (HAEi)
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8700 Horsens
Denmark
gro.ieah@ofni
