- Name for organization: Civic association for the protection of patients with hereditary angioedema
- 70 members at 1 Jan 2021
- Name of approved HAE treatments:
Fun or interesting things about the Netherlands
- Heart of the Europe
- The Czech Republic leads all nations in beer consumption per capita
- There are over 2000 castles and chateaux in the Czech Republic
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have taken place since 2012 are in the accessibility of information about HAE in the Czech Republic, both thanks to publications by our doctors and experts on this issue (which are increasingly available thanks to online publications) and of course thanks to various workshops or presentations on hereditary angioedema. Patients and others interested in HAE can now find useful information. The world of social networks has also opened up new possibilities for connecting patients with HAE across the Czech Republic, where patients no longer only have professional publications to draw information from, but now they can also learn from the daily experience of other patients.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
What is the biggest success for people with HAE? It is definitely the availability of medicines and the support of our doctors. Patients have access to treatment according to their needs and the ability to administer medication at home, which greatly simplifies life with HAE. We also cannot forget the regular opportunity to meet each other in seminars where patients always learn news and important information.
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?
We are most proud of working together to organize various events and seminars for our patients. We connect the HAE community of both our patients and their loved ones. We have a basis for support of the specialist community. We are involved in clinical trials with immunocentres. This is a rigorous job, which in turn has great benefits for all patients.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We very much appreciate the support from HAEi, and the opportunity to participate in international conferences that are moving all organizations ahead.
We are currently preparing a new website with HAEi which will once again move our communication with patients much further than before. We are also looking forward to using the HAEi Connect platform so that we can be one step closer to our patients.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
What would we like to achieve in our country by 2030? We would like to make life with HAE as simple as possible for everyone from the youngest to the oldest. This could be with the help of a new treatment, launched in our country with the support of doctors, education of the specialist community or raising awareness of HAE. We want to make sure HAE affects our lives, as little as possible.
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