On September 30 and October 1, an educational event "Exchange of opinions of experts in the field of SMA: new methods of treatment in clinical practice" was held in Astana. Speakers from Israel, Poland, Great Britain, Italy and Kazakhstan shared their experience of introducing patients with this disease with doctors from Eastern Europe and Central Asia.
The speakers were:
-Dzhaksybayeva Altynshash Khairullayevna - Doctor of Medical Sciences, Head of the Department of Neurology of the NAO "MUA", chief freelance pediatric neurologist of the Ministry of Health of the Republic of Kazakhstan.
-Aviva Fattal-Valevski - Professor of Pediatrics at the Faculty of Medicine of Tel Aviv University, Director of the Institute of Pediatric Neurology, Israel.
-Katarzyna Kotulska-Jozwiak - Professor and Head of the Department of Neurology and Epileptology at the Children's Memorial Institute of Health in Warsaw, Poland.
-Laurent Servais is a professor at the Department of Children's Neuromuscular Diseases at the University of Oxford, Great Britain.
-Natalia Savva is an international expert in pediatric palliative care, with extensive experience in organizing, implementing, training and practical provision of palliative care to children in Belarus, Russia and Kazakhstan.
-Luka Labianca is a pediatric orthopedic surgeon at the University Hospital of Sant'Andrea at Sapienza University, Italy.
Organizing a meeting of this kind is a fantastic opportunity for all of us, we learned from foreign and local colleagues about ways to optimize treatment and multidisciplinary management of patients with Spinal muscular atrophy (SMA). I would also like to note the level of structure of the event - the program was diverse and interactive, including brief presentations by experts, discussion of patients' cases, interactive seminars in small groups and question and answer sessions. Colleagues from different countries exchanged achievements and difficulties in introducing this group of patients in their countries.
Experts from Europe shared their positive experience of neonatal screening of newborns for the detection of SMA, which led to early therapy and changes in the natural course of the disease.
We discussed not only treatment methods, but also palliative care, the role of a coordinating doctor, a multidisciplinary team, and especially parents. Also, the issue of orthopedic correction of patients with SMA with spinal deformity was not spared.
I would also like to note that in order to achieve optimal effectiveness of therapy, broad interaction is necessary not only between clinicians, but also with politicians and society as a whole.
