PARE0023 New informational channels of russian patient’s organization
Authors: N. Bulgakova
Journal: Annals of the Rheumatic Diseases (2013)

<h3>Background</h3> Russia is one of the greatest countries in the world possessing the wide territory, having eight hour zones and consisting of eighty three regions. Russian population reaches 145 million of people. Unfortunately, there is no register of patients with rheumatic diseases. Epidemiological data obtained by Association of Rheumatologists of Russia revealed that only rheumatoid arthritis was found in almost one million of people, while in whole Russia about several millions of people have rheumatic diseases. <h3>Objectives</h3> National Public Organization of Invalids “Russian Rheumatological Association “Nadegda” carries out public education: explains to the patients the complicity of the disease, methods of therapy and rehabilitation, further behavior in life with such disease, renders psychological and legal assistance. “Nadegda” has the “umbrella” system of regional branches and at present there are 51 of them embracing about for thousand of members. Nevertheless, it is only a small part of patients with rheumatic diseases in Russia. It is very difficult to communicate in such a great territory. In many regions patients, especially elderly ones have no information channels at all, while in the remote regions patients have no Internet, and telephone contacts with other cities are very expensive. Taking in mind the importance of “Nadegda” activities for millions of people with rheumatic diseases the problem of additional informational channels seems necessary. Thus, for organization of regional “Nadegda” branches in the leftover 32 regions and for increasing the number of members the special system of information was created. <h3>Methods</h3> “Nadegda” together with Association of Rheumatologists of Russia at the Research Institute of Rheumatology in Moscow every 2 months organize educational conferences for patients. Leading specialists in rheumatology and rehabilitation, psychologists, lawyers and “Nadegda” members make their presentations. Conferences are transferred to central regional hospitals to rheumatic patients and re-transferred to regions within other hour zones all around Russia. In many regions it could be the only therapeutic center for rheumatic patients arriving from different parts of region. Such patients usually are observed not by a rheumatologist, but by therapist, cardiologist, nephrologist or surgeon. Such conferences gather sometimes about 2 thousand of patients. Patients even with serious cases can come to the hospital conference-hall and listen to very important to them information. “Nadegda” and Association of Rheumatologists of Russia beforehand discuss the organization of conferences with the hospital administration. <h3>Results</h3> At the result of conferences in regional hospitals patients, residing in the remotest depths of the provinces, obtain information on their disease, therapy and rehabilitation, on psychological and legal aspects. “Nadegda” also properly explains them on the legal possibility to get free, especially expensive medicines. <h3>Conclusions</h3> During the last year 4 new regional branches were organized, 187 patients became members of our organization and thousands of patients got knowledge about many problems of their life and ways of solving them. These achievements are success of “Nadegda”. <h3>Disclosure of Interest</h3> None Declared