1st Eurasian Conference on Rare Diseases & Orphan Products and Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline”.
One of the features of this event will be the simultaneous participation of all parties interested in developing the treatment, diagnosis, and working out innovative treatments for rare diseases: patients, medical and social workers, representatives of public authorities, physicians, researchers, pharmaceutical manufacturers, and non-profit organizations from different countries of the world.
These conferences – the first since 2010 – constitute a unique resource, which provides an effective platform for sharing experiences, not only between Russian and foreign participants, but they also represent a powerful tool for developing integration processes between Eurasian countries. The conferences will bring together representatives from 31 countries.
This year’s conferences will focus on the following topics:
- The First Eurasian Conference on Rare Diseases & Orphan Products will be aimed at the “Global Policy on Rare Diseases and Rare Orphan Drag”;
- The Third All-Russian Conference for Rare Diseases and Rarely Used Medical Technologies “Lifeline concerns the most actual topic in our country at the moment – managing epidemiology, establishing registers, standards of treatment and rehabilitation, and another important aspect – palliative care for patients with rare diseases.
A group working on the EUROPLAN2 project will be organized at these conferences (meeting of participants of two seminars – “Rare Diseases as a Priority for Public Health and One of the Strategic Directions of State Policy”, held in September, 2011 and April, 2012 within the framework of the EUROPLAN2 projects); the results of the EPIRARE project (project on epidemiological registers) will also be presented. For the first time in our country, such conferences will include a plenary meeting, during which the representatives of the largest Russian and European pharmaceutical companies will appear and present their work in the field of global international policy.