FIRST CYSTIC FIBROSIS EDUCATIONAL WORKSHOP
The FIRST CYSTIC FIBROSIS EDUCATIONAL WORKSHOPtook place on March 10-11, 2021, in online format. The event was organized within the HUSKROUA ENI cross-border cooperation Hungary-Slovakia-Romania-Ukraine 2014-2020 together with Slovak Cystic Fibrosis Association, municipal non-profit enterprise «Ivano-Frankivsk regional children´s clinical hospital of Ivano-Frankivsk regional council» and Charitable foundation research innovations in medicine «RIMON». The workshop is co-financed by HUSKROUA ENI CBC project HUSKROUA/1702/8.2/0008: SK UA CF CARE. Also joined the event all-Ukrainian public organization «All-Ukrainian association of care of patients with cystic fibrosis», Western Ukrainian specialized children’s medical center.
Welcome speech at the workhsop was given to Oksana Shiychuk (Head of the Representative Office of the Joint Technical Secretariat of the Cross-Border Cooperation Program “Hungary-Slovakia-Romania-Ukraine 2014-2020 Ivano-Frankivsk”), Larysa Pidverbetska (Chief Specialist for Pediatric Care of Ivano-Frankivsk Сouncil), Taras Melnyk (General Director of Ivano-Frankivsk Regional Children’s Clinical Hospital of Ivano-Frankivsk Regional Council), Nadiya Fomenko (Medical geneticist of Ivano-Frankivsk Regional Children’s Clinical Hospital of Ivano-Frankivsk Regional Council), Nataliya Pryanykova (President of the Charitable foundation research innovations in medicine «RIMON».
At the beginning of the workshop Katarina Stepankova officially presented the project of cross-border cooperation with Ukraine ENI HUSKROUA – SK UA CF CARE.
During the workshop, the following were presented: the urgency of creating a cystic fibrosis center in the Ivano-Frankivsk region, European standards of care for patients with cystic fibrosis, the register of patients of the European Cystic Fibrosis Association in Ukraine. Larysa Voloshyna, President of the All-Ukrainian Association for the Care of Cystic Fibrosis Patients, stressed the importance of helping cystic fibrosis patients and creating a strong base for treatment. Larysa Voloshyna is also acquainted with the number of patients in Ukraine, state funding, and regulations. Nadiya Fomenko presented the book by Gabriela Sabolova and Martin Shvekushova “Nutrition of children and adults with cystic fibrosis”. https://rimon.in.ua/huskroua/2020/07/03/book-by-gabriel-sabolov-martin-shvekushov-nutrition-of-children-and-adults-of-patients-with-cystic-fibrosis/
The workshop gathered more than 589 participants, including doctors, patients, and representatives of organizations from all over Ukraine and Slovakia (527 from Ukraine, 18 from Slovakia, 44 from other countries). Thanks to the international speakers: Katarina Stepankova, Andreas Jung, Anna Feketeova, Eva Beresova, Petr Števulov, Mikael Nilsson, Pavel Drevinek, Anders Lindblad, there was a strong exchange of experience and information. From the Ukrainian side, the following leading specialists and experts covered the issues of СF and related problems in Ukraine in their speeches: Nadiya Fomenko, Monika Makian, Halyna Makukh, Lyudmyla Bober, Olha Fedynska, Marko Krasnyk, Nataliya Glyadelova, Oleh Yakovenko, Tetyana Kurillina, Anatoliy Sergeyenko and Larysa Voloshyna.
According to the survey, most participants found the workshop useful for their professional activity and everyday life.
The partner of the event, the company «Respilon», provided patients with respirators.
On behalf of the organizing committee, we express sincere gratitude to the partners «Roche» and «Respilon», to the speakers of the event, and the participants. The project continues its work and invites you to the next workshop, which will take place in the Ivano-Frankivsk. Follow the future conference announcements.