Civic Chamber urges registry of sources for financing minors suffering from rare diseases
MOSCOW, October 15 (RAPSI) – Member of Russia’s Civic Chamber Commission on Development of Noncommercial Sector and Support of Socially Oriented NGOs Elena Topoleva-Soldunova believes it is necessary to create a unified registry or a database for monitoring the financing of treatment of patients suffering from so called orphan diseases.
The civic activist announced her idea at a meeting convened to discuss the mechanisms to be put in place for financing of treatment of minors suffering from such illnesses.
Earlier, the Civic Chamber informed that there was started work on a project aimed at the establishment of a special fund to finance and organize aid to children with orphan diseases.
Russia’s President Vladimir Putin proposed to raise income tax rates from 13% to 15% as concerned persons earning over 5 million rubles (about $65,000 at the current exchange rate) a year; the money were to be allocated for treatment of children with orphan diseases. He instructed Russia’s Government to work in cooperation with the Civic Chamber so to develop proposals on the respective financial mechanism by November 1.