News
Conference on cystic fibrosis, May 9-11, 2023, Ivano-Frankivsk, Ukraine.
More detailed information can be found here
February 28, 2023 opening of the cystic fibrosis center at the “Ivano-Frankivsk Regional Children’s Clinical Hospital of the Ivano-Frankivsk Regional Council” in Ivano-Frankivsk.
More information about the event you can find here
The Second CF educational workshop, on July 20-22, 2021 in Reikartz Park Hotel in Ivano-Frankivsk within the project HUSKROUA ENI CBC HUSKROUA / 1702 / 8.2 / 0008. The event occurred in a offline format. Event attended specialists with cystic fibrosis, geneticists, pediatricians, pulmonologists, therapists, obstetricians, gynecologists, neonatologists, physiotherapists, gastroenterologists, nutritionists, psychologists are invited to participate.
More information about the event and its registration you can find here
The Third educational CF workshop took place on June 4-6, 2021 in Košice, Slovakia.
The event was attended by 48 people, including 30 medical workers, 10 patients with CF and members of their families, 8 participants – people from the organizing committee, journalists etc.
More detailed information you can find here
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.
Purchased equipment Wosher tablets Labline included for mass neonatal screening, including for the diagnosis of cystic fibrosis in newborns in the area. After commissioning, it is effectively used in the work of medical and genetic laboratory.
Ivano-Frankivsk regional children´s clinical hospital has already distributed purchased equipment for daily inhalation therapy (PARI BOY SX inhalers) and PARI O PEP breathing simulators for children with cystic fibrosis.
Ivano-Frankivsk regional children´s clinical hospital received books translated into Ukrainian “Nutrition of children and adults with cystic fibrosis. 111 recipes for every day” by Gabriela Sabolova, Martina Shvekushova. The book is a practical food supplement for doctors, patients and their families with an emphasis on special medical treatments. We distribute it to specialists and patients in IF and other regions. Doctors also received collections of speeches from the 11th Slovak Conference on Cystic Fibrosis, which took place on November 28-30, 2019, as an important component of the educational project.
For the first time on the territory of Ukraine in Kiev the EASTERN EUROPEAN CONGRESS ON MUCOVIDIDOSIS was held.
During the congress, clinicians, researchers, and patient representatives were introduced to modern methods of diagnosis and treatment of cystic fibrosis in the Netherlands, the United Kingdom, Belgium, Spain, Slovakia, Poland, Germany and Ukraine.
President of the European Cystic Fibrosis Association https://www.cf-europe.eu/ Jacqueline Noordoek (Netherlands) noted that it is only through joint efforts, large or small, that the problem of cystic fibrosis in Ukraine as a mountain can be eliminated.
Larisa Voloshina, President of the All-Ukrainian Association for the Care of Cystic Fibrosis Patients, stressed the importance of registering and having a positive experience in including a registry of Ukrainian patients in the European cystic fibrosis registry. Larisa also noted the need to create expert centers on Orphan diseases, in which specialists who are familiar with the disease will work with patients. Cystic fibrosis is life-long, so it is extremely important.
More than 260 participants attended the congress, of which 140 are doctors and 120 are patients and representatives of patient organizations from all over Ukraine, as well as Latvia, Bosnia and Herzegovina, Montenegro, Poland, Serbia, Slovakia and Turkey. Thanks to the international composition of the participants, a very warm atmosphere was created in the event, in which everyone wanted to exchange experiences and thoughts about the future. According to the survey, most participants found the congress extremely useful, and also enthusiastically said that the most useful were the reports of foreign experts.
It is important to note that this congress is accredited by the European Accreditation Board for Continuing Medical Education (EACCME) for a maximum of 10 European CME points (ECMEC) and each medical representative could receive these points.
Premier Hotel Rus
Hospital, 4, Kyiv, Ukraine
September 6-7, 2019
11 Slovak CF conference with international participation was held in November 29-30, 2019, in Atrium Hotel, Novy Smokovec, Slovakia.
Transfer of experience and construction of a CF Center to provide better care for cystic fibrosis patients in the Ivano-Frankivsk region of Ukraine”
17.02.2020
Children’s Hospital, Ivano-Frankivsk, Ukraine
“The Member States of the European Union have decided to combine their know-how, resources and destinies. Together, they have built a zone of stability, democracy and sustainable development while preserving cultural diversity, tolerance and individual freedoms. The European Union is committed to sharing its achievements and values with countries and nations beyond its borders. “
SK UA CF CARE
“Transfer of experience and construction of a CF Center to provide better care for cystic fibrosis patients in the Ivano-Frankivsk region of Ukraine”
When: 03.11.2020, 01.12.2020, 20.01.2021, 09.02.2021, 24.02.2021, 19.03.2021
Where: Online
What: Project team workshop
When: 17.02.2020
Where: Children’s Hospital, Ivano-Frankivsk, Ukraine
What: Project team workshop
When: 28.10.2019
Where: Children’s Hospital, Ivano-Frankivsk, Ukraine
What: Project team workshop
When: 6-7.09.2019
Where: South Eastern European CF Congress, Hotel Rus, Kyiv, Ukraine
What: 1st working meeting of the project team
Participation in the CF Congress in Kyiv was an opportunity to meet with the project partners and start solving the first work tasks.
When: 06.09.2019
Where: South Eastern European CF Congress, Hotel Rus, Kyiv, Ukraine
What: 1st information about the SK UA CF CARE project
The general public was able to learn the first information about the upcoming project at the CF Congress in Kiev, in the section for patient organizations.
