During the fall and winter season, HAE Russia experienced many important events. We won a prestigious award, held several webinars for our members, and conducted spectacular art meetings for children diagnosed with HAE within the “Call a Friend” program.

  • In late October 2021, under the “Call a Friend” cycle, HAE Russia organized an art therapy online meeting timed to coincide with the Halloween holiday. The hosts discussed with juvenile patients with HAE how Halloween can relieve negative feelings. On New Year’s Eve, young children with HAE attended the meeting “New Year’s Wonders”, and teenagers participated in the New Year psychological game “Wonderful New Year”. In February, we held an online meeting regarded managing emotions. Such skills are especially valuable for young patients with HAE, since strong emotional experiences can cause a sudden attack. 
  • On 6 November 2021, an online school for patients with HAE “Step by step” addressed issues of drug supply in the regions of the country. The doctors focused on premedication during surgical interventions and other medical manipulations. 
  • In late December 2021, HAE Russia presented a webinar introducing the results of the annual survey based on the fall 2021 survey of the Society members. This is a sample of that data:
    • About 90% of Russian patients receive effective emergency medications
    • 81.5% of patients with HAE save the rapid-relief medication for the most extreme case
    • 63.7% feel unprotected from HAE attacks in everyday life
    • 34.7% of survey participants admitted that angioedema affected significantly their quality of life in the past few months, 46% considered their situation as “satisfactory,” and only 19.3% noted a slight impact.
  • On 17 February 2022, the annual Andrew Ado Award ceremony rewarded HAE Russia in the category “Public activity aimed at improving the health of the population as a whole and patients with allergic diseases specifically”.
  • On 12 February 2022, HAE Russia hosted a webinar for HAE patients from the North Caucasus Federal District of Russia. On 1 January 2022, new clinical guidelines came into force in Russia. Ilya Ushankov, lawyer, introduced participants to the key provisions of the guidelines and presented a step-by-step procedure required to obtain effective rapid-relief medications.  
  • On 19 February 2022, HAE Russia invited HAE patients to a webinar on “Law and Criteria”. The event gathered experts in the field of law and immunology. Ilya Ushankov, lawyer, reported on international experience in the treatment of angioedema. Irina Manto, allergist-immunologist and researcher of the Federal State Research Center Institute of Immunology of the Federal Medical and Biological Agency of Russia, shared her views on changes in approaches to treatment with the appearance of the Federal Clinical Guidelines. 
  • In February, we launched a virtual exhibition “HAE Family” on our website. The expo, honoring the International Rare Disease Day, introduces the life of families with children diagnosed with HAE.

Visit our exhibition! Visit HAE Russia’s website at https://op-nao.ru/hae-family. You can also log in through the QR-code. In the options you can choose the preferred language – Russian or English.