Webinar

On July 3 and 4, a webinar, “Life with HAE,” was held for patients and parents of children with HAE from Chelyabinsk and the Chelyabinsk region. Residents of other regions also joined the webinar, including new members of the organization who had recently joined the community. The meeting was moderated by the Chairperson of the Board of the International Public Organization “OPNAO” Elena Bezbozhnaya.

Webinar

July 22, 2024. The Interregional Public Organization “Society of Patients with Hereditary Angioedema” (IPO “OPNAO”) held an interactive webinar, during which OPNAO representatives answered patients’ questions. During the online meeting, members of the organization discussed the scheme and procedure for receiving subsidized drugs, talked about problems with drug provision in the regions, changes in legislation affecting patients with HAE, and much more.

For some patients, the webinar was the first event of the IPO “OPNAO” in which they took part, so we tried to give patients as much useful basic information on drug provision and legal aspects as possible during the online meeting.

Webinar

We receive many questions from members of our community related to women’s health, pregnancy, and childbirth support for patients with NAO. Therefore, on August 27, we gathered everyone interested in the webinar “Women’s Health and Family Planning” and invited the best experts in this field to an online meeting. Doctors introduced participants to recommended treatment regimens and new diagnostic methods and answered the most pressing questions concerning patients.

Social Survey

We talk a lot and often with you about the risks associated with the lack of high-quality therapy and prevention; members of the community receive recommendations from experts to help provide themselves and their loved ones with the necessary medications. Understanding that the most vulnerable among us are children, we decided to find out what the current situation is with the provision of drugs to minor patients with HAE. To do this, we conducted an electronic survey among the parents of such children. Thanks to everyone who took part in our study. Thanks to you, we can assess the situation and see what changes we must work on together.