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. We provide them with legal, counseling, and psychological support. We pay special attention to families with children diagnosed with HAE.
In the fall of 2022, we offered our members training in creating video content for social media. At the end of the course, participants were asked to make short video stories based on the personal experiences of patients with HAE. We wanted the participants who completed the course to benefit from the practical application of their skills. In addition, these video stories would inform more people about the existence of such a rare disease and highlight the difficulties experienced by patients with HAE. Both parents of children with HAE and the children themselves – schoolchildren and teenagers – created the video stories. The videos turned out to be very sincere and really touching. We timed the final video story marathon to coincide with Rare Disease Day, celebrated around the world on 28 February.
At the end of 2022, HAE Russia published an almanac, presenting current information with answers to the questions that most often arise for patients with HAE and treating physicians – causes and symptoms of the disease, classification, epidemiology, and updates on diagnosing and treating the disease. Besides, the almanac includes current legal information and psychological advice.
In January 2023, we launched a new series of informative webinars, useful and interesting both for newcomers and regular participants of our events from different regions of Russia. For these online meetings, we invite the best experts in a variety of fields – doctors, lawyers, psychologists, and scientists, who introduce patients to all the changes in the legal, medical, and pharmaceutical areas concerning the provision of medicines, HAE diagnosis, and therapy. The first webinar of the series was held on 21 January 2023. We addressed the most relevant issue for HAE patients: a step-by-step algorithm to obtain advanced medicines. On 24 February, patients with HAE participated in the second online meeting of the series, “Counseling Hour”. This time we covered not only legal and medical problems but also the possibilities of psychological rehabilitation. I invited members to join the free diagnostic programs for children and relatives of patients with HAE, which are now being implemented in Russia. All webinar participants were given an opportunity to ask questions and get individual expert advice.
In February, we invited children diagnosed with HAE to another online event held within our “Call a Friend” project. Analytical psychologist and art therapist Yulia Faikova and her co-host, project administrator Daria Bezbozhnaya held a “color therapy” lesson for children and trained the participants to express their emotions, feelings, and experiences. At such meetings, children learn to communicate and cope with stress, which is very important for young patients with HAE.
At the end of 2022, HAE Russia signed a cooperation agreement with the Circle of Kindness Charity Foundation. The Foundation supports and provides medications to children and adolescents with orphan diseases. The Foundation’s wards include 20 children with severe HAE. The Circle of Kindness Foundation supply all of them with the long-term therapy lanadelumab. Recently, a very important decision was approved to extend support for children with rare diseases until the age of 19; until 2023, the foundation supported only patients under the age of 18.
The starting partnership project of HAE Russia and the Circle of Kindness Charity Foundation was to organize patronage schools in different Russian cities for families raising children diagnosed with HAE. The first patronage school opened in Kazan city on 17 March 2023, based at the Children’s Republican Clinical Hospital. The meeting was held in a hybrid face-to-face and online format. The school participants included HAE patients, parents of children with HAE, and physicians, that is, pediatricians, therapists, allergists-immunologists, and other profile specialists. More than 150 people attended the event. The experts presented a clinical picture of the disease and spoke about the types of edemas and methods of diagnosing and treating the disease. The speakers highlighted a multidisciplinary approach involving specialized physicians – dentists, surgeons, gynecologists, and other specialists – together with allergists and immunologists in treating concomitant diseases of HAE patients. Our representatives informed the participants about HAE patient routing, developed by HAE Russia, and outlined our social and educational projects.
