From Chairman Elena Bezbozhnaya, HAE Russia:

On November 23, a webinar, “Treatment of HAE and a legal hour”, was held, organized by the Interregional Public Organization “Society of Patients with Hereditary Angioedema”. Participants from various regions of Russia learned about methods of treating a rare disease from experts, including the head of immunopathology, Elena Latysheva, who presented an overview of modern drugs and new methods, such as gene therapy. Lawyer Ilya Ushankov spoke about changes in the Clinical Guidelines for the Treatment of HAE for 2024, including the new long-term prevention drug “Lanadelumab”. The webinar also included a survey of participants on the availability of therapy and answers to patients’ questions regarding treatment regimens and obtaining drugs in remote regions.

The “Patient Assistance Center” was opened and created by the team of the International Public Organization “OPNAO” with 10 years of experience working with people diagnosed with “hereditary angioedema”. The “Patient Assistance Center” is a continuation of the mission of the International Public Organization “OPNAO”. The organization offers patients free support, including individual routing, expert consultations, and legal and psychological assistance. Webinars and face-to-face events are regularly held to communicate and exchange experiences between patients. The main goal of the Center is to unite people with rare diseases, protect their rights, and help them lead a full life. The organization invites everyone who is ready to support this initiative to cooperate.

On February 15, 2025, the International Public Organization “OPNAO” held a webinar, “NAO and society: how to talk about your illness?” where the main speaker was clinical psychologist Ekaterina Shutkova. Participants shared their experiences and discussed the adaptation of people with hereditary angioedema (HAE) in society. The psychologist gave advice on communicating about the disease at work and at school, emphasizing the importance of open dialogue and preparing information about HAE. Strategies for overcoming the fear of the diagnosis and ways to help loved ones understand the peculiarities of life with HAE were also discussed. The webinar brought together patients from 20 regions of Russia, strengthening the community and sharing experiences. The IPO “OPNAO” plans to continue holding such events to support patients and their families.

At the meeting organized by the Circle of Good Foundation, together with the Commission of the Public Chamber of Russia on Social Partnership, Care and Development of Inclusive Practices, the Autonomous Non-Commercial Organization “Patient Assistance Center”, and the IPO “OPNAO”, the chairman of the board, Archpriest Alexander Tkachenko, noted that thanks to regulatory documents and cooperation with NGOs and healthcare, children with rare diseases can receive medications without delays. Elena Bezbozhnaya, Head of the Interregional Public Organization “Society of Patients with Hereditary Angioedema”, presented the results of a survey among patient organizations, which showed a successful transition to the adult healthcare sector in some regions. Lawyer Ilya Ushankov emphasized the importance of NGOs in supporting young patients when transitioning to the adult network. The participants of the round table discussed the mechanisms of a “seamless” transition and prepared proposals for the government to improve the rights and opportunities of patients 19+.

The IPO “OPNAO” held a webinar, “Legal Hour”, dedicated to the rights of patients with hereditary angioedema (HAE). Participants learned about their rights to quality medical care and ways to protect these rights when interacting with medical institutions. Support resources for patients with HAE were also presented. During the webinar, the lawyer answered questions from participants regarding the legal aspects of the disease. The event took place on March 15, 2025, and brought together representatives of patient organizations and parents of patients.

A psychological training event, “Feel the support in yourself”, was held on March 29, 2025 from 1:30 PM to 3:00 PM in an online format. At the event, patients learned how to accept the diagnosis and adapt to new living conditions. The training will help them understand normal psychological reactions to the disease, master techniques for managing negative emotions, and build supportive relationships with themselves and others. Speaker – medical psychologist of the Dmitry Rogachev National Medical Research Center for Pediatric Hematology and Immunology, E.S. Shutkova.