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 [...]
From Regional Patient Advocate Michal Rutkowski I am excited to share with you that after a long pandemic period, I had the pleasure of attending a patient meeting in person organized in Yerevan in June by HAE Armenia. It was so amazing to meet local patients, caregivers, and HAE expert physicians and to focus [...]
From Regional Patient Advocate Michal Rutkowski I am excited to announce that the HAEi global family now comprises 95 Member Organizations. One of the most recent additions is HAE Oman, represented by Maryam Al Balushi. So, HAE Oman, welcome on board! March, April, and May 2022 have been very busy with different advocacy activities. [...]
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 Regional Patient Advocate Michal Rutkowski I hope you have had an enjoyable holiday season and went energized into the new year with advocacy motivation. So many things have happened since the last edition of Global Perspectives magazine, and I am happy to share it all with you. I was privileged to attend numerous [...]
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 Regional Patient Advocate Michal Rutkowski Despite the difficult global pandemic situation, I hope you are keeping safe, healthy and have been already vaccinated. Firstly, happy birthday to HAE Belarus and HAE Kazakhstan, who recently celebrated the 4th and 3rd anniversaries. The organizations and patients strive to have the first modern HAE treatment reimbursed, [...]
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 [...]
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)
10560 Main Street, Ste PS40
Fairfax City, VA 22030
United States of America
gro.ieah@ofni
HAE International (HAEi)
Vejlevej 16, 1.
8700 Horsens
Denmark
gro.ieah@ofni
