Putin Signed A Decree To Create A Fund To Help Children With Rare Diseases

Putin Signed A Decree To Create A Fund To Help Children With Rare Diseases
Putin Signed A Decree To Create A Fund To Help Children With Rare Diseases

Video: Putin Signed A Decree To Create A Fund To Help Children With Rare Diseases

Video: Putin Signed A Decree To Create A Fund To Help Children With Rare Diseases
Video: Оля Кудиненко. Фонд «Таблеточки». Про стратегию развития и предпринимателей | Big Money #35 2023, June

The fund is created with the aim of providing medical care to seriously ill children who need expensive treatment.


The Foundation will purchase medicines, medical devices (including those not registered in Russia) and technical means of rehabilitation for such children, which are not included in the already existing federal list for disabled people.

If necessary, support for the child can be provided outside the country.

The expert council of the foundation, which will include the main freelance specialists of the Ministry of Health of the Russian Federation, representatives of scientific, medical, religious and public organizations, including those in the field of protecting the rights of patients, will assess the availability of indications for providing medical care to children.

The order of purchasing drugs and medical supplies for a specific child or groups of children with a serious illness will be approved by the Cabinet.

The government is also instructed to ensure the location of the organization in Moscow and annually provide grants in the form of subsidies from the federal budget. We will remind that earlier it was decided to send funds raised from increasing personal income tax for incomes above 5 million rubles to help seriously ill children.

The Foundation will maintain a special information resource containing information on the purchase of drugs, medical devices, technical means of rehabilitation, as well as on the results of treatment of children. The resource will work as part of a unified state information system in the field of health care. According to the decree, the founder of the fund is the Ministry of Health of Russia.

By the same decree, Vladimir Putin appointed Alexander Tkachenko, the head of the Children's Hospice and a member of the Public Chamber of the Russian Federation, as chairman of the board of the foundation. "The first drugs should be delivered to patients in January 2021," he said in an interview with RIA Novosti. that we started preparing in advance."

By decree, the President also approved the composition of the Board of Trustees of the Circle of Kindness Foundation. It included:

Daykhes N. A. - Director of the National Medical Research Center of Otorhinolaryngology of the Federal Biomedical Agency "(Chairman of the Board of Trustees)

Kirkora I. V. - Director of the autonomous non-profit organization "Authors Center" World of the Family"

Mitina S. A. - President of the interregional charitable public organization "Society of Disabled Persons Suffering from Hunter Syndrome, Other Forms of Mucopolysaccharidosis and Other Rare Genetic Diseases"

Mikheeva L. Yu. - Secretary of the Public Chamber of the Russian Federation

Myasnikova I. V. - Chairman of the All-Russian public organization "All-Russian Society of Rare (Orphan) Diseases"

G. A. Novichkova - Director General of the Dmitry Rogachev National Medical Research Center for Pediatric Hematology, Oncology and Immunology, Ministry of Health of Russia

Oleskina E. A. - Director of the Charitable Foundation for Assistance to the Elderly and the Disabled "Old Age in Joy"

Petryaykina E. E. - Director of the Russian Children's Clinical Hospital of the Pirogov Russian National Research Medical University of the Ministry of Health of Russia

Rappoport K. A. - Founder of the Charitable Foundation for Aid to Children Suffering from Epidermolysis Bullosa "Bela. Butterfly Children"

Roshal L. M. - President of the Union of the medical community "National Medical Chamber"

Samoilova Yu. O. - singer

Federmesser A. K.- Director of the Moscow Multidisciplinary Center for Palliative Care of the Moscow City Health Department

Fechina L. G. - Deputy Chief Physician of the Sverdlovsk Regional Children's Clinical Hospital

Khabensky K. Yu. - President of the Konstantin Khabensky Charitable Foundation

Khamatova Ch. N. - Co-founder of the GIFT LIFE Charitable Foundation for Children with Oncohematological and Other Serious Diseases

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