Employees of the SCD for Cystic Fibrosis Took Part in the Seminar for Specialists of Regional Government Authorities and Healthcare Institutions Responsible for the Interaction of the RF Subjects with the Charity Fund «The Circle of Well»
On September 22-23, the Public Chamber of the Russian Federation held a training seminar for specialists of regional government authorities and healthcare institutions responsible for interaction of the RF subjects with the Charity Fund «The Circle of Well».
The event was organized by the Charity Fund to support children with severe life-threatening and chronic diseases, including rare (orphaned) diseases, «The Circle of Well».
The scientific organizer of the seminar was FSBEI SPE the Russian Medical Academy of Continuous Professional Education of the Ministry of Healthcare of the Russian Federation.
At the opening of the meeting, Alexander Tkachenko, Chairman of the Board of the Charity Fund «The Circle of Well», emphasized the increase of the work effectiveness with the subjects of the Russian Federation as the main goal of the meeting, as well as the discussion on current problems and effective practices of their solution.
Elena Kondratyeva, Head of scientific and clinical department for cystic fibrosis at the Research Centre for Medical Genetics, Holder of an Advanced Doctorate in Medical Sciences, Professor, delivered a report «The Experience of the Targeted Therapy for Cystic Fibrosis in the Russian Federation: Interaction of Experts and the Charity Fund», where the results of efficiency and safety of the targeted medications for cystic fibrosis in the Russian Federation were shown for the first time after six months of use. This work became possible after the release of the 10th anniversary issue of the Cystic Fibrosis Register of the Russian Federation, which includes dynamic patient monitoring during targeted therapy.
Elena Kondratieva noted that cystic fibrosis is the most frequent within the orphaned diseases, has many mutations, so targeted therapy is not suitable for all patients.
«However, when it fits, it completely changes their lives. Such therapy became available due to the Charity Fund «The Circle of Well», - summarized Elena Kondratyeva.
Фото пресс-службы Российской медицинской академии непрерывного профессионального образования