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.