In the Public Chamber of the Russian Federation, participants of the ZSK discussed medicines for patients with rare diseases

On November 10, the Civic Chamber of Russia hosted a round table on the treatment of patients with orphan diseases and regional practice of drug provision. Representatives of the Kuban Parliament and experts participated in the discussion via video link, who raised issues of continuity of therapy and equal access to medicines. This is reported by the press service of ZSK.

The discussion took place within the first 11 months of the law on regional intergovernmental transfers.

Under the leadership of the Deputy Chairman of the ZSK Nikolai Petropavlovsky in the conversation on the VKS was attended by the Chairman of the profile Committee of the MDM Vladislav Vasilchenko and her first Deputy Dmitry Miroshnikov. The participants considered the problems of distribution of federal support and regulatory issues.

Special attention was paid to the continuity of treatment for children and adults, as well as the transition of patients from the children's health care system to the adult. According to the participants, this transition should not lead to a break in therapy or loss of access to life-saving drugs.

Vladislava Vasilchenko noted that such platforms help to discuss regional practices at the federal level and form proposals for improving the drug supply system. She stressed that for patients with orphan diseases, drugs are not only a treatment, but also an opportunity to live a full life.

As previously wrote “MK in the Kuban”, in Krasnodar achieved the provision of therapeutic nutrition for girls with a rare disease.