March 25, 2021

Russia – NMO OPPID part of “Immunity 2021: Doctor-Patient-Society” international meeting

The goals of the 1st International Congress “Immunity 2021: Doctor-Patient-Society” that took place on February 11-12 were to attract public attention on the problems of patients, to offer an informative space in the field of medicine, to promote the development of medical knowledge among both medical professionals and patients, to develop and improve mechanisms for interaction between medical organisations, authorities and public organisations, to improve the quality of life of patients, discuss the features of medical organisations during the COVID 19 pandemic, and importantly, to create a platform for dialogue between the medical community and the authorities, where the voice of patient communities should be heard.

Natalia Berseneva, head of the regional PID patient organisation “Immune Harmony”, Co-chairman of OPPID and highly committed in the organisation was very happy with this first initiative: “This has been a great success! It was our first experience at international level, connecting patients, doctors, officials. It was held online from Ekaterinburg and gathered doctors, patients, scientists from Russia, France, Turkey, Belarus, Uzbekistan, Kazakhstan, Kyrgyzstan.” A total of 1,500 people attended the congress across 2 days and the online format proved to be the best effect to share important and recent information efficiently from a budget perspective.

The programme was very diverse and addressed a wide range of topics from scientists, physicians and patient representatives. Patients organisations had their specific international event where attendees could listen to Natalya Berseneva about the “Experience with gathering patients PID in Russia and patient organisations’ administrative bodies and society.” and “Providing patients with primary immunodeficiency with medical nutrition prescribed for health reasons, but not included in the lists”. Other well-known friends from the IPOPI family were also speakers, such as, Anton Emelin – co-chairman of OPPID and Iya Dirko, from “Let’s Save Immunity” from Belarus. He spoke about “The scope of applying the legislation on drug provision and the organisation of treatment for patients with PID. Problematic Moments“ while Iya presented the “Experience of the patient community of Belarus: successes and problems”.

IPOPI was among the supporting organisations and its president, Martine Pergent, took part to the opening and gave a lecture on “Quality of life of patients diagnosed with PID“.

It should be added that Neonatal screening with TREC KREK method in the frame of a state program was recognised as paramount. 

As a conclusion, Natalia stated: “It was a valuable experience as patients should know more about their diagnosis and understand their disease to be able to discuss adequately with the doctors. Patients’ testimonies were also very useful for the doctors, allowing them to walk in their patients’ shoes. Patients shared their problems – and successes – when they struggle to get their rights recognised.
Most valuable was also the attendance of many general practitioners. Focus was made on PID diagnosis for these doctors to enable them to suspect a PID. We are about to continue this discussion together with the doctor community to improve PID diagnosis and to make PID patient life better.”

Programme and report are available 

All videos available on Instagram: @oppid_ru