RCMG Organized the First Patient’s Conference on Landuzi-Degerin Muscle Dystrophy
On February 5, 2022, employees of RCMG held an online conference for patients with muscle dystrophy Landuzi-Degerin. More than fifty patients and their families attended. The discussion raised the issues of patient register, clinical and molecular-genetic diagnostics of the given condition, and therapeutic approaches and improving the quality of life of patients.
To date, there are one hundred and sixty patients from a hundred families in the Russian Federation’s register of patients with muscle dystrophy Landuzi-Degerin, who have been confirmed by molecular-genetic diagnostic methods.
The number of confirmed cases is constantly increasing due to the implementation of molecular-genetic diagnostics of this state in RCMG. Mikhail Skoblov, PhD in Biological Sciences, the head of the functional genomics laboratory of RCMG, told about this diagnostics and other modern molecular-genetic methods in his report.
There was paid special attention to the issues of clinical trials of preparations and genetic therapy, about which the researcher of the scientific-advisory department of RCMG Aysilu Fanzirna Murtazina told. The conference was also addressed by a kinesiologist with extensive experience working with muscle dystrophy patients Darya Alexandrovna Shuvalova, which emphasized the necessity and importance of regular physical activities with an individually selected programme for each patient.
Most of the conference was devoted to answering questions from patients and their relatives, which highlights the topicality and importance of the event.
There are still a lot of topics to discuss this disease, and participants expressed their desire to hold similar events in the future.