Experts discussed methods of support for patients with neurofibromatosis

On December 10, 2024, a press conference was held in Moscow to mark the seven-year anniversary of the start of the volunteer movement to create a system of care for patients with neurofibromatosis in Russia. The event was organized by the MROO "22/17" to raise awareness of the disease, discuss the achievements as well as the challenges facing the system of diagnosis, treatment and social support for patients with neurofibromatosis.

Over the past seven years, the support system for patients with neurofibromatosis in Russia has undergone significant changes: comprehensive DNA diagnostic programs have been introduced, a new drug has been registered for the treatment of inoperable tumors in children, and psychological and legal support programs have been launched.

The event was addressed by leading experts and specialists in the field of medicine and healthcare: N. V. Kulakova, E. Logacheva, Y. Zhulev. V., Zhulev Y. A., Chistoprudova A. I., Dinikina Y. V., Strelnikov V. V., Dorofeeva M. Y. The participants reviewed the achievements in the field of diagnosis and treatment of neurofibromatosis, the effectiveness of social support programs and the current challenges faced by patients and their families.

The conference was attended by more than 2,000 viewers who joined the online broadcast, indicating a high level of interest and the need to raise awareness of the disease and patient support measures among Russians.

The event was held in a productive and friendly atmosphere, providing an opportunity to share experiences and discuss critical issues on the way to creating an effective and accessible support system for patients with neurofibromatosis.