AIPM IN PARTNERSHIP WITH EURORDIS SUPPORTS INITIATIVES

All over the world February, 29 was marked as International Rare Disease Day - when the organizations active in the field of rare diseases and their partners join forces to raise awareness of society on problems of millions of people living with orphan diseases.

Association of International Pharmaceutical Manufacturers (AIPM) partners with the international non-governmental patient-driven alliance EURORDIS and contributes to the communication to the Russian patients, doctors, and other stakeholders with the Russian version of web resource www.eurordis.org/ru.

In Europe, by EURORDIS estimations, there are about 30 million patients affected by more than 6000 rare diseases. Due to EURORDIS advocacy notable shifts in EU healthcare and social policy on rare diseases took place making advancement in the national plans for rare diseases in a number of EU Member States and other European countries. According to the official data of the Ministry of Health and Social Development of the Russian Federation, there are 230 rare diseases identified in Russia at this moment, and basing on the data coming from the regions the federal register of patients with orphan diseases are to be introduced soon.

In Russia, the government’s attention to the needs of patients with rare diseases has started to take shape. With the Federal Law “On Fundamentals of Citizens' Health Protection in the Russian Federation" coming into force the first steps were made in the legislative field. Ministry of Health and Social Development has conducted comprehensive work to form principal approaches for state policy in public health service and state support of rare diseases treatment.

Partnership between АIPM and EURORDIS is aimed at assisting patients, families, patient advocates and potentially doctors in Russia with new opportunities to search the necessary information on rare diseases, modern methods of diagnostics and treatment, medical products developed, as well as on the international initiatives to support separate rare diseases groups of patients. With appearance of the Russian language part on www.eurordis.org , all information, which was previously accessible to patients of other countries, becomes open for Russian-speaking communities as well.

“The main idea in our partnership with EURORDIS is to provide Russian patients and healthcare practitioners with comprehensive, evidence based, precise and regularly updated policy and patient advocacy information carefully gathered by such a reliable international organization as EURORDIS. This step will allow to include those who want to advance national or worldwide policy for rare diseases or those who need help in searching necessary medical decisions, - Vladimir Shipkov, AIPM Executive Director says. – At the same time, our own major challenge today is to contribute to the development the adequate drug coverage system for such patients in Russia. It is a multistakeholder goal demanding join efforts of state bodies, pharmaceutical industry, medical communities, as well as professional and patients associations. For this purpose the Orphan Medicines & Biological Committee was founded within the AIPM structure, it joins experts from the leading member companies. Today the Association is an active participant of the dialogue with the state and other key stakeholders that is aimed to improve regulatory and legislative environment in this area.”