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 [...]
From Regional Patient Advocate Javier Santana During the month of December, we are hosting another webinar in Spanish with Dr. Rafael Zaragoza on HAE and COVID-19 in order to update the HAE community from the region on the latest medical information. We expect this event will be well attended. We are also excited that [...]
Due to the restrictions that have been implemented in several countries, not many countries held events related to hae day :-) 2020. In Panama the group of patients managed two religious services that were dedicated on behalf of the health of patients with HAE in that country. Religious services were broadcast live on television [...]
From Regional Patient Advocate Javier Santana: It was exciting to see the patients in Panama getting involved in Rare Disease Day activities. Members of HAE Panama generated HAE awareness and educated the public by participating in media interviews to discuss the disease and joined in on special rare disease events along with 11 other rare [...]
From Regional Patient Advocate Javier Santana I have held discussions with a pharma company from Costa Rica who wishes to introduce a generic HAE treatment to Costa Rica, Guatemala, and Peru. The company is currently engaged in discussions with doctors in these countries. A European citizen will be temporarily relocating to El Salvador to participate [...]
From Regional Patient Advocate Javier Santana: The HAE patient group in Panama is now officially and legally registered in the country. The group, together with Dr. Olga M. Barrera, has participated in several conferences in the interior of the country to educate professionals on HAE. Muhammad Rawat, the group leader, reports that the group of patients is quite active working along with [...]
The HAE patient group in Panama is continuing the efforts to advocate for the government to consider granting access to HAE treatments.
From Regional Patient Advocate Javier Santana: As part of the events of hae day :-) 2019, Dr Olga M. Barrera (second from left) made an exhibition “The Multiple Faces of HAE” at the San Fernando Hospital in Panama to educate and raise awareness among the hospital’s medical community. Dr Barrera attends to 20 patients with HAE in Panama City. During [...]
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)
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8700 Horsens
Denmark
gro.ieah@ofni
