State guarantees for orphan patients to be discussed at the Izvestia Medical Center press center

On October 13, at 11:00, a press conference on the topic will be held at the Izvestia press center.: "Lists of state guarantees for orphan patients. For the state or for patients? How to negotiate!".

What are the current mechanisms for providing medicines and medical care to patients with rare diseases? Which regulatory documents play a key role? How to achieve a balance between the needs of patients and the resources of the state?

Participants:

- Marina Sidukhina, Deputy Chairman of the Federation Council Committee on Budget and Financial Markets, Senator from the Samara Region;

- Alexander Rumyantsev, Deputy of the State Duma of the Russian Federation, Chairman of the Expert Council of the State Duma Committee on Health Protection for Rare Diseases;

-Svetlana Karimova, President of the National Association "Genetics", member of the Public Council of the Ministry of Health of the Russian Federation, member of the Expert Council of the State Duma Committee on Health Protection for Rare Diseases;

- Vadim Kukava, Executive Director of the Association of Pharmaceutical Companies "Infarma";

-Natalia Smirnova, first class lawyer, member of the Expert Council of the State Duma Committee on Health Protection for Rare Diseases;

-Nato Vashakmadze, Head of the Department of Orphan Diseases and the Prevention of Disabling Diseases at the Research Institute of Pediatrics and Child Health NCC Nº2 of the Russian National Research Medical University. Academician B.V. Petrovsky, MD.;

- Snezhanna Gorchakova, Chairman of MBOO HUNTER SYNDROME, member of the Board of Trustees of the Circle of Goodness Foundation.

For FULL-time accreditation to the press center, you must send an email press-center@iz.ru send your full name, media name, series and passport number.

Important: Media representatives can participate in the press conference ONLINE with prior accreditation. To do this, send an email press-center@iz.ru Full name, media name, and mobile number linked to the installed Telegram app.

The broadcast will be available on the website iz.ru .

Media accreditation: press-center@iz.ru , tel. (495) 937-61-70, ext. 4805, 4236

Entrance for media representatives is subject to prior accreditation upon presentation of a passport.

Address: Moscow, Party lane, 1, room 57, building 3, 2nd floor.

Learn more about the events of the press center on the website.