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To Russia with love! EURORDIS Website and eNews now available in Russian language

December 2012

Fireworks over Moscow’s Saint Basil cathedral Russian rare disease patients and patient organisations have an extra reason to celebrate this holiday season as EURORDIS unveils its Russian-language website. Over a year in the making, the new website is truly a labour of love, designed to strengthen ties with rare disease patients throughout the Russian Federation and to increase the capacity of Russian-language patient advocates to improve conditions for people living with rare diseases. There are as many as 250 million Russian speakers, located primarily in Russia, Belarus, Kazakhstan, Uzbekistan, Ukraine, Kyrgyzstan, Moldova and Azerbaijan. EURORDIS is working closely with patient groups in several of these countries. The addition of Russian to the existing EURORDIS languages of English, French, German, Italian, Portuguese and Spanish would not have been possible without the generous support of the Association of International Pharmaceutical Manufacturers (AIPM). EURORDIS also extends its gratitude to all the volunteers who worked to make the Russian-language EURORDIS website and eNews a reality.

The new website will provide Russian patients, healthcare practitioners and other stakeholders with accurate, comprehensive, up-to-date policy and information of interest to patients. Key sections of the EURORDIS Russian-language website are already online, including those covering Membership, About Rare Diseases, About Orphan Drugs, Living with a Rare Disease, and News and events. Other sections will become available progressively in 2013.

The EURORDIS eNews is also available in Russian, with 130 subscribers already signed up. Please inform your Russian speaking contacts and encourage them to subscribe to this eNews!

These are exciting times for rare disease patients in Russian-speaking countries, who are experiencing their own evolution of rare disease awareness and initiatives to shape rare disease policy in the region. EURORDIS is taking an active role to facilitate the emergence of a strong rare disease community that participates in European and international cooperation and collaboration to improve conditions for people living with rare diseases. Six Russian patient organisations have already become EURORDIS members, encompassing between them hundreds of individual rare disease patient groups. Producing the EURORDIS presentation brochure and Membership application in Russian is also part of the new efforts to strengthen ties with the Russian-speaking rare disease community. As it has for several years now, EURORDIS continues to offer fellowships to patient advocates from the region to attend EURORDIS Membership Meeting and Summer School, translates into Russian the European Conference on Rare Diseases, regularly supports and participates in national conferences, contributes to patient advocate capacity building in Russia, and supports the collaboration between rare disease patient organisations to progressively speak with one voice.

EURORDIS wishes all of its friends and members a very happy holiday season and extends a warm welcome to its newest Russian-language members and visitors to the website.

Russian-language EURORDIS homepage