In brief

  • Name for organization: Interregional Public Organization “Society of Patients with Hereditary Angioedema”
  • More than 200+ members from all over Russia at 1 Jan 2021
  • Name of approved HAE treatments:
    • Basic therapy-Danazol( Danol), tranexamic acid
    • On-demand: Icatibant, C1 human esterase inhibitor
    • Long-term – c1 human esterase inhibitor

Fun or interesting things about Russia

  • Russia occupies one of the leading positions in the ranking of the most unfriendly countries! Although, according to the Russians themselves, they are not taught to smile in childhood, because they consider it a manifestation of frivolity. In fact, the Russians are quite open and in most cases will not refuse a request to help.
  • Despite the fact that more than 146 million people live in Russia, there are territories that have never been set foot on by a human being! It is in this country that the mysterious and frightening, beautiful and alluring taiga stretches, the area of which is equal to 15,000,000 kilometers! This is almost a third of all forests on the planet!
  • Continuing the theme of records, we will pay attention to Lake Baikal, which is considered the largest source of the purest fresh water on our planet! The depth of Lake Baikal is 1,642 meters, and the total volume of the water layer is more than 20 cubic kilometers.

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

Positive changes for patients with HAE in Russia have been a significant increase in the level of awareness of the disease both among the population and among the medical community; many patients have begun to receive modern medications; clinical trials of new drugs are currently underway. Our organization interacts with a variety of government agencies, appeals to the competent authorities in order to solve problems and problems that arise for the HAE patient community. We were able to secure a response from the military commissariat that people with a diagnosis of HAE are not subject to military conscription. In addition, as a result of many years of interaction with specialized medical institutions, a separate category “defect in the complement system” was identified from the group “primary immunodeficiency states”, which will eventually allow patients with HAE to receive disability support.

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

The biggest achievement for patients with HAE in our opinion is that the vast majority of patients have gained access to modern medications.

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?

Most of all, we are proud of the fact that together we have achieved the provision of modern treatment for 80-90% of our members.

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

From HAEi we received a unique opportunity to exchange and access new up-to-date information; the opportunity to establish contact with patients and organizations from other countries.

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

Our next steps are to strengthen, multiply and develop our achievements top date. We also very much hope for great progress in the treatment of HAE over the next 10 years.

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