Central America and Caribbean

News from Central America and Caribbean

2022-10-31T13:19:21+01:00October 31, 2022|Central America and Caribbean, Costa Rica, Dominican Republic, HAEi News, Puerto Rico, South America|

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 [...]

News from Central America and Caribbean

2022-07-07T09:49:26+02:00July 6, 2022|Central America and Caribbean, Chile, Costa Rica, Dominican Republic, HAEi News, South America|

From Regional Patient Advocate Javier Santana In April, a follow-up was given to the survey that HAEi designed for my region in Spanish. The survey will help gather important information on the current situation related to HAE. All group leaders from the countries of the region participated in the survey. Chile held a virtual [...]

News from Central America and Caribbean

2022-04-04T10:34:06+02:00April 4, 2022|Central America and Caribbean, Costa Rica, Dominican Republic, HAEi News, Panama, Puerto Rico, Trinidad, Virgin Islands|

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 [...]

News from Central America and Caribbean

2021-12-30T11:02:03+01:00December 30, 2021|Central America and Caribbean, Costa Rica, Dominican Republic, HAEi News, Honduras, Nicaragua, Panama, Puerto Rico|

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, [...]

News from Central America and Caribbean

2021-10-12T11:33:56+02:00October 6, 2021|Central America and Caribbean, Costa Rica, Dominican Republic, Guatemala, HAEi News, Panama|

For several months, HAE patients in Costa Rica have conducted interviews with the media to denounce the situation they are experiencing as the Government has not heard their claims. Several patients have been hospitalized with severe HAE attacks, one has been intubated to save his life, and according to HAE Costa Rica, three patients [...]

10 year achievements – Puerto Rico

2021-10-11T13:28:22+02:00July 15, 2021|10 year achievements, Central America and Caribbean, Puerto Rico, Regions|

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 [...]

10 year achievements – Panama

2021-10-11T13:28:22+02:00July 15, 2021|10 year achievements, Central America and Caribbean, Panama, Regions|

This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Panama 18 members at 1 Jan 2021 Name of approved HAE treatments: Ruconest – registered, but we don’t have access yet Fun/interesting facts Great weather. Happiness of the People. Beautiful [...]

10 year achievements – Guatemala

2021-10-11T13:28:22+02:00July 15, 2021|10 year achievements, Central America and Caribbean, Guatemala, Regions|

This input is dated May 2021 >> View content in Español In brief Name for organization: HAE Guatemala 2 members at 1 Jan 2021 Name of approved HAE treatments: None Fun/interesting facts Culture. Gastronomy & food. Tourism. What positive changes have happened for people with [...]

10 year achievements – El Salvador

2021-10-11T13:28:22+02:00July 15, 2021|10 year achievements, Central America and Caribbean, El Salvador, Regions|

This input is dated May 2021 >> View content in Español In brief Name for organization: HAE El Salvador 4 members at 1 Jan 2021 Name of approved HAE treatments: Danazol Fun/interesting facts Tourism. Food & gastronomy. Landscapes & places to visit. What positive changes [...]

10 year achievements – Cuba

2021-10-11T13:28:22+02:00July 15, 2021|10 year achievements, Central America and Caribbean, Cuba, Regions|

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 & [...]

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