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28.02.2014

Press conference. Helping people suffering from rare diseases.

The 28th (or 29th) of February is the Global Rare Diseases Awareness Day. Rare diseases are also called “orphan diseases”, as patients and their families feel themselves isolated and abandoned. The disease is rare and difficult to help.

There are quite a lot of rare diseases; according to the data from European Organization for Rare Diseases EURORDIS (http://www.eurordis.org/ru/) – 5 to 7 thousand: the vast majority of monogenic hereditary diseases, significant part of chromosomal abnormalities, as well as rare infectious diseases, autoimmune, oncological, hematological diseases.
Effective treatments for most rare diseases are not yet developed, but every year new opportunities appear: diet therapy, enzyme replacement therapy, targeted therapy...
According to experts, more than 2 million people in Russia suffer from rare diseases. Recently more attention was given to the problems of these people: laws and regulations were amended, standards of treatment of some rare diseases were developed; in the regions patients are now offered assistance. But it is still too early to think that the equal access to health care and social assistance, quality and up-to-date diagnostics is already here – in many cases it is very difficult to achieve! Unfortunately, it is impossible to help all patients but it’s possible to save some of them and improve the quality of life of others. For this, appropriate measures shall be taken.
In particular, these measures include support from the federal budget of the drug provision for patients with rare diseases; establishment of centers of expertise and treatment for rare diseases; expanding the screening of newborns for rare diseases.
People with rare diseases are waiting for our understanding and sympathy.

At the press conference, leading experts will discuss the issues of organizing an effective system of care for patients and other issues related to rare diseases. The experts are:
Ekaterina Yurievna Zakharova – doctor of medical sciences, Chairman of the Board of “All-Russian Society of rare (orphan) diseases”, Head of the Laboratory of inherited metabolic diseases of the Medical Genetic Research Center
Yuri Alexandrovich Zhulev – Co-Chair of the All-Russian Union of Public Associations of patients
Rosa Ismailovna Yagudina – doctor of pharmaceutical sciences, professor, Head of Department of organization of drug supply and pharmacoeconomics, Head of Laboratory of pharmacoeconomical studies at I.M. Sechenov First Moscow State Medical University (Moscow), Chief Editor of journals “Pharmacoeconomics” and “Modern organization of drug supply”.
Ekaterina Sergeevna Podushkina – head of sector for assistance to patients with Pompe disease at the “All-Russian Society of rare (orphan) diseases”.
Elena Fedorovna Sudorgina – candidate of medical sciences, cardiologist (Orenburg)
Organizer of the event: All-Russian public organization “All-Russian Society of rare (orphan) diseases”. (www.rare-diseases.ru)

The conference will be held on February 28, 2014 at 11:00 at the Palace of Culture “Brateevo”(Moscow, Brateevskaya street, 16, build. 3).
How to get there: one minute walk from Alma-Atinskaya metro station.
Access from Maryino metro station – by bus 619, from Kashirskaya metro station – by bus 742, from Orekhovo metro station – by bus 765, from Krasnogvardeiskaya metro station– by bus 825 – to the bus stop "Third subdistrict Brateevo"
Our contact information: tel. +7 (916) 597-73-17; E-mail: vooz@bk.ru (Marina Davidovna Terekhova)