Policy Developments in Russia: One Step Closer to Treatment for Rare Diseases

Cara Hesse | April 23, 2012

In December, the Russian Ministry of Health and Social Development (MOHSD) published a List of Rare Diseases that includes Gaucher, MPS I, Pompe, Fabry, Cystic Fibrosis and several other rare diseases. By creating the list, the Russian health care authorities have begun the implementation of newly adopted legislation called the “Rare Disease Law on Health Care for the Citizens of Russian Federation," signed by President Medvedev on November 22, 2011.  Both the new law and the rare disease list are significant steps towards improving access to the treatment for rare disease patients.

While it will take a year or more to implement the new policy, rare disease advocates in Russia were delighted by the news.  In Russia, a disease where not more than 10 cases per 100,000 people is considered rare.  Russian authorities have singled out three categories of diseases as priorities:

  1. socially-important diseases
  2. diseases which pose a danger to others, and
  3. rare (orphan) diseases.

As part of this effort, the MOHSD is developing a federal registry of patients with rare diseases and orphan drugs to be reimbursed by the state and overseen by regional authorities.  

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