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  who is leading the interregional non-governmental organization “Assistance to invalids from childhood suffering from Gaucher disease and their families” (Russian Patient organisation). All the organisational work was also performed and coordinated by the Russian Patient Organisation.

This was the first meeting where Gaucher patients, patient’ representatives and doctors from the following countries came together: Russia, Belarus, Moldova, Ukraine, Azerbaijan, Kazakhstan, Armenia, Georgia and Mongolia. Some of those countries are already members of the EGA, whereas others heard about it for the first time.

The main aim of this meeting was to discuss the current issues Gaucher Patients are facing in their countries and to identify their unmet needs, as well as to present the work of the EGA. 

The meeting started with a presentation from doctor Ekaterina Zaharova on diagnostic possibilities in Russia, followed by a presentation from Pascal about the EGA, covering such aspects as the EGA´s aims, its structure, its communication with its members and different work areas (e.g. Humanitarian aid, cooperation with the EWGGD, research, support to the members.).

Afterwards each participant presented the situation in its country and described problematic issues, by sharing their experiences and concerns. Following each presentation, the participants discussed possible solutions. Interestingly the main discussions were focusing on diagnostics, access to treatment, raising awareness amongst doctors and the differences in legislation.

Two main common issues were identified:

  1. Urgent need to educate doctors in the field of Gaucher Disease, treatment and management of untreated Gaucher patients;
  2. Access to treatment/lack of governmental funding: unfortunately, in many of the participants countries still a lot of patients are without treatment.
  1. Photograph of the participants in St Petersburg.
  2. After the official end of the meeting, Sandra and Pascal had several individual face to face discussions with representatives from those countries that are not yet members of the EGA and who were very interested in discussing particular national issues.
     
    “My feeling is that it was a very interesting and useful meeting; the atmosphere was pleasant and sincere. Everyone was welcomed.  It was exciting to see how engaged and devoted all the participants were discussing together, how eager they were to exchange information and to network.” 
    Sandra Zariņa
     
    “I am very thankful to Marina, that she offered to us the opportunity to meet with so many patient representatives from countries we haven´t been in touch with before. The repetitively testimonies, especially those related to the need of more education, literally opened my eyes and made clear to me, that the EGA needs to focus more on education of “young doctors” to provide support to the international Gaucher community. Be assured, that the EGA, together with its partners, will invest more resources to support and to facilitate better education of doctors interested in the field of Gaucher.”
    Pascal Niemeyer