In brief

  • Name for organization: HAE Costa Rica
  • Approx. 20 members at 1 Jan 2021 (the association registration is pending)
  • Name of approved HAE treatments:
    • Danazol

Fun or interesting things about Costa Rica

  • The food & gastronomy.
  • The great variety of flora and fauna.
  • The beautiful beaches and mountains.

What positive changes have happened for people with HAE, in your country, from 2012 to now?

The first HAE symposium was held in 2018. More doctors have met who wanted to know more about the disease and more HAE patients have been discovered.

What is the biggest achievement for people with HAE, in your country, from 2012 to now?

We are on the way to registering the association for HAE patients in Costa Rica.  The media have had great interest in collaborating with us and talking about our disease. We are fighting to start the registration of medicines and treatments in the country.

What is the resource, event or activity that you are most proud of organizing for people with HAE in your country, from 2012 to now?

We have many new members but unfortunately we have not been able to meet in person due to the pandemic situation, so what we have done is communicate through Facebook, whatsapp and zoom.

Interviews were conducted with important media in the country.

What support/ resources have you used from HAEi? What has HAEi helped you to achieve?

HAEi offered us its collaboration with resources to be able to register our association, a project we hope to finalize soon.

HAEi also helped us with the hosting of the HAE website for Costa Rica.

Your Next Step… What do you want to achieve for people with HAE in your country by 2030?

All of our efforts are focused on two goals:

  1. Get medication through social healthcare.
  2. Increase knowledge in the Costa Rican medical community about HAE.

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