Russia

From HAE Russia September: HAE Russia, together with the National Medical Research Center for Pediatric Hematology, Oncology and Immunology, named after Dmitry Rogachev, began a sociological study to study the quality of life and psychological state of patients diagnosed with HAE: The relationship between the intensity of swelling and the level of quality of life [...]

From President Elena Bezbozhnaya, HAE Russia In recent months, HAE Russia has expanded to include new members. Over the seven years of its existence, we have already united more than 300 participants. We try to do our best so that our patients with HAE are not left alone with their disease and related problems. [...]

From President Elena Bezbozhnaya, HAE Russia Over the past six months, HAE Russia has hosted various highlights, face-to-face meetings, and online webinars, with adults and children involved from all over the country.  Over the summer, we invited members living in the Moscow region to a webinar on “Long-Term Prevention and Screening of HAE Patients [...]

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 [...]

From HAE Russia We bring good news for juvenile HAE patients and their parents as children with HAE will soon begin receiving advanced pathogenetic medications from the Circle of Good Foundation. The Circle of Good Foundation is a public non-budgetary charitable organization. Established in January 2021 by presidential decree, the Foundation aims at supporting [...]

From the HAE Russia Team: In the summer of 2021, HAE Russia held several meetings with patients – both in-person and remotely. We assisted our members with legal issues and arranged consultations with physicians, psychologists, and lawyers while young patients with HAE attended another series of meetings under the “Call a Friend” project.  On [...]

From Chairman Elena Bezbozhnaya, HAE Russia: In Russia, many restrictions imposed due to the spread of the COVID-19 pandemic have already been lifted. The activities of HAE Russia are gradually returning to the face-to-face format, although many events are still conducted both offline and online. In Spring 2021, we held the fourth International Conference [...]