Welcome to the SOUTH EASTERN EUROPEAN CYSTIC FIBROSIS Conference, organized by CF EUROPE together with CF UKRAINE, SI “INSTITUTE OF MEDICAL SCIENCES OF UKRAINE HEREDITARY DISEASES”, WESTERN UKRAINIAN SPECIALIZED CHILDREN’S MEDICAL CENTER, ALL-UKRAINIAN PUBLIC ORGANIZATION «ALL-UKRAINIAN ASSOCIATION OF CARE OF PATIENTS WITH CYSTIC FIBROSIS», CHARITABLE FOUNDATION RESEARCH INNOVATIONS IN MEDICINE «RIMON», from 6 to 7 September 2019 in Kyiv, Ukraine.
The Venue: Premier Hotel Rus, 4, Hospitalna str, Kyiv, Ukraine
Cystic Fibrosis Europe (CFE) is the federation of national CF Associations, representing 40.000 CF patients and their families in 34 countries. They work together with all national and international patient and medical associations, for a better and longer life for all people with CF in Europe.
As you certainly know life expectancy is very low in South Eastern Europe compared to ‘older’ EU countries (average age at death is 9 to 13 y compared to 30 and more in western Europe). Studies have shown this is partly due to lack of knowledge by the local health professionals and patients/families and poor access to appropriate diagnosis and quality care by the patients. Awareness and education of health professionals, patients and families and patient associations is an important instrument to improve this situation.
The Congress will provide an opportunity to meet together for researchers, scientists, young scientists, postgraduate students, doctoral students, geneticists, pediatricians, pulmonologists, obstetricians, neonatologists, physiotherapists, gastroenterologists, nutritionists, psychologists, immunologists, physicians, pulmonologist, nutritionist, endoscopists, cf patients and other specialists who deals with cystic fibrosis disease.
We expect 200 participants from different countries as Ukraine, Belgium, Netherlands, United Kingdom, France, Slovak Republic, Poland, Romania.
This meeting aims to:
- 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)
- 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)
- 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:
- Problems, decisions and best practices for the CF patients in Ukraine”
- Update on Cystic Fibrosis: What do we know about CF? New clinical researches and access to the newest therapies for CF treatment. Transplantations as a perspective of the CF patients. What to expect for the future?
- The CF Patient organizations in Europe and in Ukraine
- The CF Registry, an important tool for CF care and CF research
- CF Research – conditions to become a CTN-center
- Basic defect and diagnosis
- CF Care in Europe – standards of care
- CF-Care the User: parent, patient
- CF Care – aspects: Nutrition, Hygiene, Pulmonary issues
- Adult care: Adherence. Specific complications and comorbidities
- And others…