March 31, 2025
OPPID Advances Support for PID and Rare Disease Patients in 2024
In 2024, OPPID carried out extensive work to support PID and other rare disease patients, making a meaningful impact.
Yekaterinburg, March 15, 2025. OPPID summarised its busy work in 2024. The organisation held numerous events aimed at supporting patients with primary immunodeficiencies and their families.
Immune Academy and International Forums
This year has been focused on primary immunodeficiency (PID) events in Russia. The Immune Academy, held in Yekaterinburg, served as a valuable bridge between doctors and patients. OPPID has been one of the organisers and has attended the VI Russian Congress for Rare Diseases held in Saint Petersburg. This was the sixth congress appealing to rare diseases patients’ problems, and it has become an effective communication between the patients’ community and state authorities. The congress was attended by the Federal Minister of Public Health, Mikhail Murashko. «We have created the unique educational environment where patients’ doctors and experts can share their experience and knowledge», – commented Elena Ivancha, the OPPID coordinator for educational programs.
Large-scale info-campaign.
OPPID launched a large-scale information campaign, which includes the creation of videos on patient routing and diagnostics for individuals with primary immunodeficiency (PID). Special attention was paid to the preparation of info-materials – 4 leaflets for patients. In cooperation with the doctors and artistically creative people, we have updated the PID 12 warning signs’ poster, now available for all interested parties. Our goal is to make the information concerning rare diseases available for patients and their families – says Natalia Berseneva, Vice-chair of OPPID.
The Good Mission in the regions
The OPPID team organised a large-scale campaign, “The Good Mission,” which reached Pskov, Tambov, Karelia, Buryatia, Saint Petersburg, and Tatarstan. Specialists provided consultations to families, held informational events, and offered necessary support.
The main objective of the campaign was the establishment and improvement of better communication between patient communities and public health authorities of the region. We brought together officials, doctors and patients for a couple of days in interactive communication. This has brought great results not only for PID patients but also for other rare diseases. «In every region, we find families in particular need of our support. It’s especially important to be near those of them living in the most remote areas – says the project coordinator.
Cultural agenda
OPPID has developed a cultural agenda. Participation in the «Cinema without barriers» festival has helped to attract attention to the rare diseases. The «Immuno-Life» photo exhibition has become the live manifestation of how art can become an instrument of advocacy and enlightenment. Through art we tell the stories of those living with rare diseases helping to neutralise stereotypes – says Mikhail Moskalev, the Chairperson and coordinator of the cultural projects.
Social assistance
OPPID does not limit itself to informational support. We have many patients to whom we provide targeted assistance in their difficult legal issues, such as support in their trials, and we also help them take part in social projects. We have one PID patient whose dream came to life by participating in the Wish Tree project supported by the President of Russia. “We do not just help patients, we change their lives for the better” says the head of social service in OPPID, and one of our main tasks is to get the state to ensure proper treatment and medication for PID patients.
The history of success
One of the most impressive projects of the year was the movie «The price for the life», telling the story of Tatiana Drozdova – the ADA-SCID patient of 22 years old. This movie has touched the hearts of thousands of people. Another attractive movie was The Kabuki Syndrome Patient Story, which emphasised the importance of early diagnostics: “Every story is not just about the practice case; it is about human life. The life of the one we can help,” says the OPPID SMM director.
Feedback
According to the patients’ surveys, we have had feedback from 298 different regions. Especially highly estimated were informational materials and personal consultations of the experts. «Thank you for existing. Because of you, we now understand how to move forward – was the feedback from one of the patients in The Republic of Buryatia.
Conclusion
We are proud of our results for last year. Every project and every consultation has an impact in the improvement of rare diseases’ patients’ lives. – says Natalia Berseneva, Vice-chair of OPPID. The organisation continues to develop new formats of support for patients with primary immunodeficiencies and their families, strengthen partnerships, and expand the geographical scope of its activities.
