In brief

  • Name for organization: Civic Association of Immunodeficient Patients HAE / AAE
  • Members at 1 Jan 2021: Only an inaccurate number of members is known
  • Name of approved HAE treatments:
    • Anargil – registered and categorized – for long-term prevention
    • Ruconest – recombinant C1-INH – for the treatment of seizures
    • Intravenous Berinert – human C1-INH – for the treatment of seizures and short-term prevention of risky surgery
    • Berinert subcutaneous – for long-term prevention – only registered
    • Takhzyro – lanadelumab – for long-term prevention, we are waiting for the approval of the first patients

Fun or interesting things about Slovakia

  • National meal “bryndzové halušky” – special sheep cheese
  • World famous athletes – Peter Sagan, Petra Vlhová
  • Beautiful mountains of the High Tatras

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 Slovakia are:

  • Establishment of a patient organization for HAE patients in 2016, which increased awareness of the disease among the general public.
  • There has been an increase in awareness of HAE among physicians. Physicians are better prepared to deal with acute attacks of undiagnosed patients, thus reducing the risk of improperly applied treatment that could endanger the patient’s life.
  • Slovakia is part of a clinical study to improve the patient’s life and reduce the risk of adverse seizures
  • An effective drug for HAE patients has been approved and we are awaiting the approval of use in the first patients
  • By setting up a patient organization as well as a website, patients have better access to basic information about the disease, what are the symptoms of the disease, what is the cause of the disease and what are the currently available treatment options, which factors cause the seizure.

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

The positive changes that have taken place for people with HAE are:

  • We have joined the international organization HAEi
  • We met a lot of experts, learned a lot of important information about the disease and the development of research in the development of new drugs for HAE
  • Gradual steps make the lives of people with HAE in Slovakia better thanks to the approval of drugs and cooperation with HAEi
  • It is also important to increase patient awareness, development in the field of diagnostics and preventive treatment, although it is still very challenging
  • HAE patients have started to connect, they suddenly know that they are not alone, they can share their experience with the disease

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 positive changes that have taken place for people with HAE are:

  • As a result of establishing of a patient organization, there was more talk about HAE disease, more experts and people got to know about HAE
  • Thanks to the patient organization and cooperation with HAEi, new effective drugs are coming to Slovakia that improve the patient’s life and minimize the risk of seizures
  • Patients feel more support, doctors have more information and knowledge about the diagnosis of HAE
  • We believe that our successes will multiply and improve to make the lives of patients with HAE better and more carefree

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

HAEi has allowed us to be a part of great conferences that have been very instructive and inspiring. We had the opportunity to find out how to work in a patient organization, how to be helpful for patients. With the help of HAEi, we learn a lot of important information that makes life easier for people with HAE. They also provide great support and assistance in disseminating awareness of HAE not only among patients but also among physicians and professionals.

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

A campaign to raise the profile of the disease is currently underway, and sessions and articles are being prepared to help patients and professionals better understand the life of a person with HAE. We believe that the campaign will facilitate the demanding process of approving and registering effective medicines, which are extremely important for people with HAE. The campaign aims to constantly raise awareness of the disease among patients as well as among doctors and professionals.

Other activities will be aimed at making the lives of people with HAE more pleasant by sharing problems as well as pleasant experiences. We believe that the life of a patient with HAE in Slovakia will become simpler and better.

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