In brief

  • Name for organization: Association of Patients with Angioedema (AMSAO)
  • Number of members at 1 Jan 2021: 300 families
  • Name of approved HAE treatments:
    • Takhzyro
    • Firazyr
    • Berinert
    • Ruconest
    • Cinryze
    • Berotralstat

Fun or interesting things about France

  • We support democracy
  • We do not like lies
  • We are concerned about the protection of the planet

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

More and more patients have today access to Takhzyro (almost 200 patients), this is a wonderful treatment that suppresses almost all attacks.

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

Quality of life is now a key factor for approval of a new treatment by the Health authorities, it’s not just saving lives.

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?

Regular meeting with patients and doctors to be up to date regarding knowledge on the diseases, new treatment introduction, availability, and access conditions.

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

HAEi is the best focal point to keep contact with all associations around the world.

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

Next step is to find ways to decrease the prices of modern treatments that are today too expensive to be available to all HAE patients.

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