Progress in Eastern Europe

Two very important rare diseases legislative changes have occurred in Eastern Europe last month. On 26 April 2012 the Russian government adopted a decree establishing a Federal Registry for Rare Diseases, comprising 7 groups of rare disorders and post-transplantation conditions. During the same period, a legislative proposal was submitted for consideration in the Verkhovna Rada (the Parliament) of Ukraine, aiming to ensure access to treatment for patients with rare diseases. Both initiatives are keystones for Eastern Europe and this success is a result of many years of hard work and collaboration of the National Association “Genetics” (Russia) and the Association “Children with spinal muscular dystrophy” (Ukraine) respectively.