This input is dated May 2021

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In brief

  • Name for organization: ADAH
  • 41 members at 1 Jan 2021
  • Name of approved HAE treatments:
    • Berinert
    • Firazyr

Fun/interesting facts

  • Delicious food, top quality wines, sunny weather and fun loving people.
  • Fado – the tradicional portuguese form of music is part of UNESCO’s patrimony heritage and football where we have some of the best players in the world.
  • One of the more ancient countries of the world (at over 800 yrs-old!)

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

The positive changes that have happened for people with HAE in Portugal are:

  • Approval of a second medication for treatment of acute attacks.
  • Increase in the number of hospitals with medication available for treatment of HAE attacks.
  • And finally one of the most important changes is the official recommendation for home treatment.

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

The biggest achievement for people with HAE in Portugal was getting the medication available for self-administration. It makes all the difference in the patient’s quality of life.

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 event/activity that we are most proud of organizing for people with HAE in Portugal was the virtual conference to celebrate 10 years of our national association, that was almost a revival of ADAH, and also the work we did together with doctors and associates in order to get home treatment available.

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

Website hosting for our site, going to the HAE Global Conference, using the valuable collaboration of the HAEi RPA responsible for Portugal to obtain and exchange data and participate in local ADAH meetings.

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

Increase the number of members and their interaction with the association.

Secure widespread availability of self-administration treatment and medications in Portugal.

Increase the number of available medications and the number of hospitals with medication for HAE. Greater awareness of this rare disease in society in general and among health professionals as many still demonstrate poor knowledge about what HAE is and how to act in acute attacks.