- Name for organization: Ukrainian patients association for hereditary angioedema (HAE UA)
- 43 members at 1 Jan 2021
- Name of approved HAE treatments:
Fun or interesting things about Ukraine
- Ukraine is the largest country in Europe.
- The city of Rakhiv, in the Carpathian Mountains, is the geographical center of Europe.
- One of the world’s most famous Christmas songs is Shchedryk, a folk song recorded by Ukrainian composer Nikolai Leontovich. The world knows it as the Carol of the Bells or “Ring, Christmas Bells”.
What positive changes have happened for people with HAE, in your country, from 2012 to now?
The positive changes that have happened to people with HAE in Ukraine are the creation of our organization on March 3, 2017, the creation of a website and HAE pages in social networks, the presence of 2 physicians who know about HAE and provide information to other doctors and patients. In 2020, a modern treatment for HAE, Cinryze, was registered.
What is the biggest achievement for people with HAE, in your country, from 2012 to now?
The biggest achievement for patients with HAE in Ukraine is the ability to receive life-saving treatment with C1 inhibitor in hospitals in 2021.
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 held a meeting with patients and doctors in 2018 dedicated to the HAE Day. Communication with each other, support, timely information is the most important thing. We publish stories and record videos of patients, doctors regularly give scientific reports about HAE.
What support/ resources have you used from HAEi? What has HAEi helped you to achieve?
We use website hosting, seek help from our RPA, participate in regional seminars and travel to the global HAE conference. Thanks to the support of HАЕi, we received official recognition of our organization.
Your Next Step… What do you want to achieve for people with HAE in your country by 2030?
We want to find more patients in our country, provide them with a sufficient amount of medicine and achieve the right to self-administration of HAE medicines. We plan to actively develop, share experience with other countries, and participate in research on new methods of HAE treatment.
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