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Russia to register patients with rare diseases

February 29, 2012, 13:16 UTC+3

In the first half of this year Russia for the first time is to compile a register of patients with rare (orphan) diseases

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MOSCOW, February 29 (Itar-Tass) —— In the first half of this year Russia for the first time is to compile a register of patients with rare (orphan) diseases, Health and Social Development Minister Tatyana Golikova told an inter-regional video conference.

This work will be conducted under the law on the basic principles of the protection of Russian citizens, effective since January 1, 2012. For the first time ever the law introduced the term orphan diseases, and the responsibility for the treatment of such patients is placed on the constituent territories of the Russian Federation. In the near future the government is to adopt a resolution determining a list of 24 rare diseases which are a threat to life. The regions will have six months to identify all patients suffering such diseases.

“We shall have six months not only to draft a government resolution and acts by the Health and Social Development Ministry, but also to form a register of patients,” Golikova explained. “The adoption of the government’s resolution will take some time, so I am asking the regions of the country to start forming such a list. We, naturally, will begin to compile our own federal register on the basis of segments formed in regions.”

Treatment will be financed from the budgets of Russia’s territories. Golikova did not rule out that federal money might be used, too.

“There is such a possibility, but first and foremost a register is to be formed,” she added.

The register will be revised every six months to include new patients. Golikova recalled that the law took effect on January 1, and although the register is yet to be formed, assistance to such patients will be extended in full.

“There can be no refusals,” she said.

The term rare is applied to diseases that affect one patient in 10,000 people.


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