The specialist spoke about the need for equal access to therapy for orphan patients

Patients with rare diseases unite to defend equal rights to access modern therapies and innovative medicines. Snezhanna Gorchakova, Chairman of the MBOO HUNTER SYNDROME, member of the Board of Trustees of the Circle of Goodness Foundation, told about this on October 13 at the Izvestia press center at a press conference on: "Lists of state guarantees for orphan patients. For the state or for patients? How to negotiate."

According to her, it is important not to divide patients by nosology, but to achieve equal access to the necessary drugs for all those living with rare diseases.

"We are rare, but strong together. It's easy to break one finger, but not the palm. The palm is a symbol of rare diseases. When we're together, we can't be broken. Therefore, it is necessary to fight not for everyone for their nosology, but for the equal rights of patients with orphan diseases to access the latest therapy," she stressed.

Gorchakova also expressed concern that not the most effective drugs are still being purchased in a number of regions, despite the availability of modern analogues.

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State Duma Deputy, President of the Dmitry Rogachev National Research Medical Center for Pediatric Hematology, Oncology and Immunology, Academician of the Russian Academy of Sciences Alexander Rumyantsev told the Izvestia News Center on March 25 that technologies for the treatment and diagnosis of orphan (rare) diseases are rapidly developing in Russia.

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