This input is dated May 2021

In brief

  • Name for organization: HAE Peru
  • 46 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Tranexamic acid
    • Danazol (known as Danocrin)
    • Kalbitor (known as ecallantide)

Fun/interesting facts

  • We are one of the countries with the best gastronomy in the world.
  • We are a multicultural country where 51 indigenous peoples and 48 native languages ​​coexist.
  • We have the coastline, the Andean mountains and the jungle. We have 28 of the 32 World Climates (a classification system) in one country.

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

The positive changes that have occurred since 2019 for people with HAE in Peru are:

  • More doctors treating HAE.
  • We have the first HAE ACARE center in Peru.
  • We have an HAE Clinical Practice Guide.
  • We have tripled the number of patients diagnosed with HAE in Peru.

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

The greatest achievements for people with HAE in Peru are the following:

  • The health registration of the first specific medicine for HAE in Peru was obtained: Kalbitor (known as ecallantide).
  • That private insurance covers a higher % than 50% of the Kalbitor (ecallantide) drug.
  • HAE Peru became part of international organizations such as ALIBER (Latin American Alliance for Rare Diseases) and HAEi.

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?

The events and activities that we are most proud of in Peru are the following:

  • Our first hae day :-) walk was organized in 2019, gathering more than 100 people.
  • Medical personnel were trained and HAE talks and screenings were held in different cities of Peru.
  • Funding was obtained to carry out the tests that allow the diagnosis of HAE, for patients with limited resources.
  • We began the implementation of the AEHKIDS PERU project, through which boys and girls learn about HAE through videos and stories.

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

The sources and support that HAEi has provided to AEH Peru are the following:

  • Thanks to research and publications, AEH Peru and its members are up to date regarding HAE treatments and studies.
  • Website hosting.
  • AEH Peru asked our assigned RPA for help.
  • HAE Peru created a network of contact and support with other HAE associations around the world.

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

We want to achieve the following for people with HAE in Peru by 2030:

  • Additional treatments besides Kalbitor are available in Peru, including those suitable for children and pregnant women suffering from HAE.
  • That HAE drugs are subsidized by the Peruvian State.
  • That patients get an early diagnosis.
  • Achieve a suitable comprehensive treatment for patients in the private and public sectors nationwide.
  • Have HAE specialists in all departments (administrative divisions) of Peru.