Russian Federation

National Alliances
National Association of  Patients with Rare Diseases '"GENETICA"
National Association of Patients with Rare Diseases '"GENETICA"
Russian Association of Rare Diseases
Russian Association of Rare Diseases
2018 events in Russian Federation
Russian Federation

Rare Disease Day in Russian Federation

The Russian Federation has participated in Rare Disease Day since 2009, involving the general public and stakeholders alike. Events have varied from photo and children’s art exhibitions, to roundtables and advocacy events. In 2017, the Russian Federation held their seventh annual national awards in rare diseases. Those who had contributed greatly to the rare disease cause were honoured with a ‘Blue Bird Award’.

In 2018, the Russian Federation focused on both fundraising and advocacy. They had a charity auction to raise money for children living with a rare disease. There was also a press conference on the need to constantly improve legislation and the health care system and a conference entitled: ‘Rare Disease in Russian: Diagnosis, Treatment, Life’. One of the specific focuses of this conference was how to improve regional care for people living with a rare disease.

Do you know of any events not listed here? Or would you like to get involved? Email us at [email protected].

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