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 or interesting things about Panama

  • Great weather.
  • Happiness of the People.
  • Beautiful beaches from the Atlantic & Pacific oceans.

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

  • The positive changes that have occurred for the people with HAE in Panama have been to get to know each other, to come together as a group and form a single force and create an association of patients with Dr. Olga Barrera, our treating physician.
  • Knowing well the mechanism of action of the disease has also been very helpful for us, because that way we will know how to act during an attack

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

  • One of the greatest achievements for Panama has been to be the first country in Central America to have an association of patients with a registered legal status.
  • In Panama we also have a law that guarantees social protection to the population suffering from rare, infrequent and orphan diseases, Law No. 28 of October 28, 2014.
  • For us, as an association, the greatest achievement will be to have accessibility to medicines, we have not achieved it yet but we have a lot of FAITH that we will achieve it soon.

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?

  • In 2017, the first panel of Experts on Hereditary Angioedema for Central America and the Caribbean was held in Panama, this event had the participation of  experts in HAE.
  • The most important event has been the first meeting of patients with Hereditary Angioedema in Panama.
  • We have had other face-to-face patient meetings, and during the pandemic situation we meet via zoom. A  psychologist also participates in these meetings and provides support to the association’s patients.
  • We have also had some publications about the disease in various newspapers.
  • We had the opportunity to participate in the program “Medicina Al Dìa” who made a complete report on Hereditary Angioedema. Dr. Olga Barrera was the expert on the subject. 3 patients participated in the programme, sharing their experiences with HAE.
  • Recently Dr. Olga Barrera, on behalf of the patients association, had the opportunity to give a talk about Hereditary Angioedema with the senior class at the University of Medicine of Panama.

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

Thanks to HAEi, the leaders of Central America and the Caribbean have met, we have had some meetings via zoom, which gave us the opportunity to exchange ideas and gave us support.

HAEi awarded 2 members from Panama a grant to attend the HAE Global Conference in Germany, but due to the pandemic it could not be held.

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

We hope that all patients with Hereditary Angioedema in the country will have access to various treatments for HAE.

We also hope that we have identified more patients, because we know there must be more and they won’t know what they are suffering from.

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