From HAE Russia Pandemic spreading affected the plans of HAE Russia. Many events had to be switched to online. However, even remotely, we actively helped patients with HAE to deal with legal issues, organizing online meetings with doctors, psychologists and lawyers. Representatives of HAE Russia participated in major international events – and during the [...]
From Chairman Elena Bezbozhnaya, HAE Russia During the challenging time of the COVID-19 pandemic, HAE Russia keeps in touch with patients and supports its members through all available means. In the fall, we have ensured several important events, both online and offline. In early September, when the coronavirus rate slowed down, the School of [...]
In the summer of 2020, Russia adopted legislative changes in the area of health care, which also affected patients with HAE. Therefore, HAE Russia held several events with legal presentations for the members of our organization to better navigate when making important decisions on the treatment and prevention of the disease. In addition, in [...]
From Chairman Elena Bezbozhnaya Early 2020 HAE Russia held several events for the members and organized an educational exhibition at the museums of the two biggest cities of the Russian Federation. In January we conducted a webinar “Effective Health Care: Diagnosis and Treatment of HAE” with members from Novokuznetsk, St. Petersburg, Ulyanovsk, Yekaterinburg, Voronezh, Murmansk [...]
By Michal Rutkowski, Regional Patient Advocate for Central and Eastern Europe, Gulf Region & Middle East: The penultimate weekend of October 2019 saw the largest gathering of the year of the HAE International Central Eastern Europe community. As has become the tradition, the capital city of Poland hosted for the fourth consecutive time the annual regional advocacy event, dedicated to [...]
From Chairman Elena Bezbozhnaya On 19-20 June 2019, HAE Russia held the International Scientific and Practical Conference “Strategy and tactics for treating patients with HAE. Life without fear”. Organized for the third time, this year the conference received the status of a major international event. The conference gathered highly experienced doctors and members of patient organizations from Belarus, Hungary, Kazakhstan, and Poland [...]
From Chairman Elena Bezbozhnaya, HAE Russia (SPHA OPHAE): On hae day :-) 2019, the Interregional Public Organization “Society of Patients with HAE” (SPHA OPHAE) celebrated its third anniversary. Today the organization includes more than 150 people from 40 regions of the Russian Federation, providing administrative and legal support for patients and holding regular specialized scientific conferences, promotion events, seminars and webinars. [...]
HAE RUSSIA Межрегиональная общественная организация Общество пациентов с наследственным ангионевротическим отеком Russia · Central Asia · Europe On this page we have pulled together presently available information relevant for HAE patients and caregivers in Russia. HAE online in Russia [...]
The HAEi Central Eastern European region is a massive one consisting of 12 countries with a population close to 300 million people – and with only around 15 per cent of all HAE patients diagnosed. Therefore, this region requires an individual approach and hands-on assistance in activities related to advocacy, gaining access to and [...]
HAE International is a global non-profit network of member organizations dedicated to raising awareness of hereditary angioedema and improving the lives of people with HAE.
HAE International (HAEi)
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