Hungary-Slovakia-Romania-Ukraine ENI Cross-border Cooperation Programme 2014-2020
Slovak Cystic Fibrosis Association

Municipal non-profit enterprise «Ivano-Frankivsk regional children´s clinical hospital of Ivano-Frankivsk regional council»
Charitable foundation research innovations in medicine «RIMON»
All-Ukrainian public organization «all-Ukrainian association of care of patients with cystic fibrosis»
Western Ukrainian specialized children’s medical center

First cystic fibrosis educational workshop

Welcome to the First cystic fibrosis educational workshop, organized within the HUSKROUA eni cross-border cooperation programme together with Slovak Cystic Fibrosis Association, municipal non-profit enterprise «Ivano-Frankivsk regional children´s clinical hospital of Ivano-Frankivsk regional council», Charitable foundation research innovations in medicine «RIMON», all-Ukrainian public organization «all-Ukrainian association of care of patients with cystic fibrosis», Western Ukrainian specialized children’s medical center, March 10-11, 2021, Online (+1 CET)

The Finance

Workshop is co-financed from HUSKROUA ENI CBC project HUSKROUA/1702/8.2/0008:

SK UA CF CARE

Transfer of know-how and creation of Cystic Fibrosis Centre to ensure better care for Cystic Fibrosis patients in Ivano-Frankivsk Region“

„The Hungary-Slovakia-Romania-Ukraine ENI CBC Programme 2014-2020 provides EU funding for sustainable development along the the border of Ukraine with Hungary, Slovakia and Romania, helps reducing differences in living standards and addressing common challenges across these borders.“ ‘The Member States of the European Union have decided to link together their know-how, resources and destinies. Together, they have built a zone of stability, democracy and sustainable development whilst maintaining cultural diversity, tolerance and individual freedoms. The European Union is committed to sharing its achievements and its values with countries and peoples beyond its borders’

We expect 500 participants and patients/patient representatives from all-over Ukraine who are interested and deal with CF.

This meeting main topics

  1. Enhance knowledge about Cystic Fibrosis (about the disease, curative and preventive treatment and organization of quality care according to European standards of care) in order to improve CF care in a region where the standards and health outcomes are very low compared to north-western countries – average life expectancy varies from 5 to 15y, compared to 35-40y in western Europe).
  2. Build networks of people who care for people with CF: between patients (associations) and health professionals, across disciplines (allied health, psychosocial, medical) and across borders. Participants from 10-12 countries from the region are expected to attend and interact with each other and European patient representatives and experts from countries where CF care is more developed).
  3. Capacity building, awareness and lobbying for better access to care: we want to ensure that a larger number of patients get access to the right diagnosis, care and medication through workshops for patient representatives, patients/families and professionals and contacts with authorities.

Topics presented and discussed in the meeting

  • SK UA CF CARE – project of cross-border cooperation with Ukraine ENI HUSKROUA
  • Actuality of creation the Cystic Fibrosis center in Ivano-Frankivsk
  • New therapies for CF
  • Standards of CF care
  • European CF Patients Registry
  • Importance of nutrition in patients with CF – PEG
  • Adult CFcare
  • Diagnosis and treatment of lung disease in CF
  • Genetics of cystic fibrosis  and newborn screening in Ukraine
  • And others…
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Partners

For more information please call technical conference organizer Charitable Foundation Research Innovations in Medicine “RIMON” +38 (044) 537-5277, +38 (050) 448-9338, project coordinator Nataliya Pryanykova, or contact by e-mail: nataliya.pryanykova@rimon.in.ua