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1.Assist in the diagnosis of patients with Gaucher disease , to obtain information about the disease and the latest achievements of medicine in the treatment of this disease .

2.Support for doctors, medical and research institutions conducting research in this area and who treat patients with Gaucher disease .

3.Carrying collect information about Gaucher disease , the creation and maintenance of a register of patients with Gaucher disease .

4.Helping patients and their family psihologichskoe legal advice , representation of their interests in state and municipal authorities , searching for sponsors to provide financial and material support to patients.


30 -31 May 2014 the conference " Day of patients with Gaucher disease ," which discussed the organization of health and social care ...

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Gaucher disease in children , a book for young patients and their parents



2017-09-28 ThuPMUTCE_September+0000RSepPMUTC_0C5

Gaucher Patient meeting St Petersburg June 2017

As already mentioned before, this year in June the EGA representatives Pascal Niemeyer and Sandra Zariņa attended a Gaucher Patient meeting in St Petersburg. The idea to organize such a meeting came from Marina Terekhova,

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2017-09-21 ThuPMUTCE_September+0000RSepPMUTC_0C5

Пресс-релиз к III Всероссийскому Форуму пациентов с болезнью Гоше

«Решение актуальных проблем пациентов с болезнью Гоше в  России»

Редкие, но не одинокие!

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2017-07-14 FriPMUTCE_July+0000RJulPMUTC_0C5

24 июня 2017 года в Санкт-Петербурге прошла Встреча общественных организаций пациентов с болезнью Гоше стран СНГ и ближнего зарубежья с представителями EGA (Европейский Гоше Альянс).

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2017-06-21 WedPMUTCE_June+0000RJunPMUTC_0C5

Рабочая группа «Социальная справедливость» Общероссийского народного фронта (ОНФ) проводит опрос получателей льготных лекарственных препаратов на предмет доступности лек. препаратов для них.

Вы можете заполнить анкету онлайн или на бумаге.

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