From Chairman Elena Bezbozhnaya, HAE Russia

HAE Russia (OPNAO) continues to develop patient support programs, educational initiatives, and outreach projects. Over the first eight months of 2025, numerous significant events were held – from trainings and flash mobs to webinars and public events.

APRIL 2025
Online Training “Psychological Responses to Illness”
On March 29, an online training was held with clinical psychologist Ekaterina Shutkova, an expert at the Dmitry Rogachev Center.
Participants discussed anxiety, uncertainty about the future, isolation, and the importance of expressing emotions.
Particular attention was paid to anxiety reduction techniques and mindfulness methods.
The training served as a platform for sharing experiences and strengthening psychological support within the community.

MAY 2025
International hae day :-)
On May 16, the organization held a flash mob and published video messages from patients and doctors, emphasizing the importance of mutual support and open dialogue.
Webinar “Routing Patients with HAE” (May 23).
Speakers: Elena Bezbozhnaya and Ilya Ushankov.
Routing, medication provision, and legal aspects were discussed. Patients received practical recommendations and algorithms for interacting with institutions.
Online training by Anastasia Krysheva.
A patient with HAE and a fitness trainer offered a free BODYBALANCE class for patients of all ages. The project emphasized the importance of physical activity, even for rare diseases.

JUNE 2025
Federal Recognition.
On June 5, the organization received a letter of thanks from the Civic Chamber of the Russian Federation. The award was presented to Elena Bezbozhnaya for her contribution to the development of civil society and support for patients with rare diseases.
E.V. Bezbozhnaya noted that the organization’s success is the result of the collaborative work of lawyers, psychologists, and coordinators.

JULY 2025
Children’s Online Meeting “Joy of Summer”
A creative workshop for children aged 5 to 13 was announced on July 31.
The event was held as part of the “Call a Friend” project and helped children express their feelings and share joy through creativity.

SEPTEMBER 2025
Webinar “How Acceptable Are Medication Side Effects?” (September 10)
Speakers: Yuri Shifrin and Ilya Ushankov.
Adverse reactions, the legal aspects of reporting them, and treatment safety issues were discussed.
Patients received instructions on filing side effect reports and advice from specialists.

OCTOBER 2025
October 1 — First Prayer for the Healing of Seriously Ill Children. The first prayer service approved by the Synodal Commission of the Russian Orthodox Church was held at the Church of St. Alexis, the Man of God, in Krasnoye Selo. Elena Bezbozhnaya attended the event, noting the spiritual support received by the families of seriously ill children.
October 21 — “Children at Risk” Survey. HAE Russia conducted a survey on the pain of icatibant injections. 190 people participated, including 39 parents. The results showed that 80% of adults and 90% of children experience pain during injections, and one in two children refuses injections. The study highlighted the need to find solutions to reduce pain and improve treatment adherence.
October 24 — Webinar on Legal Support for Patients. The event brought together participants from across Russia. Patient rights protection mechanisms, challenges with medication availability, and examples of successful solutions were discussed.
Over the first nine months of 2025, 32 new families joined the organization, bringing the total number of patients to approximately 500.

Home Results

  • Six key educational and psychological events were held.
  • The organization received federal recognition and expanded its community.
  • Children’s and sports initiatives aimed at strengthening psychological and physical health are actively developing.
  • Two sociological studies (patient surveys) were conducted.
  • HAE Russai strengthened its position as a leading organization in Russia supporting patients with HAE.

Conclusion

The period from March to October 2025 was a time of growth and recognition for the organization. The work of HAE Russia continues to inspire patients, specialists, and families to be actively involved, provide mutual assistance, and develop a culture of support.