Jeffrey Modell Foundation centers' network activities in Central and Eastern Europe (JMF CEE) have contributed to the development of care for patients with primary immunodeficiencies. On the data continuously collected from individual centers in participating countries since 2011, we demonstrate a steady improvement in a number of aspects concerning complex care for patients with primary immunodeficiencies. The presented data show an improvement of awareness about these rare diseases across the whole Central and Eastern European region, an increase in newly diagnosed patients as well as genetically confirmed cases, earlier establishment of diagnosis, and improved access to clinical treatment. We also present an active patient involvement that is reflected in the expansion of patient organization centers and their activities. The cooperation within the JMF CEE network has also contributed to greater international exposure of participating centers and further to the gradual development of research activities in the rapidly evolving field of primary immunodeficiencies. The improvement of all important aspects of the complex field of primary immunodeficiencies within the JMF CEE network documents the strength and advantages of the joint and coordinated networking.

Center of Allergology and Immunology East Tallinn Central Hospital Tallinn Estonia

Center of Primary Immunodeficiencies Vilnius University Hospital Santaros Klinikos Vilnius Lithuania

Clinical Emergency Hospital for Children Louis Turcanu Timisoara Romania

Clinical Immunology and Stem Cell Bank University Hospital Aleksandrovska Sofia Bulgaria

Department of Allergology Rheumatology and Clinical Immunology University Children's Hospital University Medical Center Ljubljana Ljubljana Slovenia

Department of Allergy and Immunology Azerbaijan Medical University Baku Azerbaijan

Department of Immunology 2nd Faculty of Medicine Charles University Motol University Hospital Prague Czech Republic

Department of Immunology and Allergology Center of Primary Immunodeficiency Lithuanian University of Health Sciences Kaunas Lithuania

Department of Infectious and Pediatric Immunology Faculty of Medicine University of Debrecen Debrecen Hungary

Department of Pediatrics and Adolescent Medicine Division of Neonatology Ped Intensive Care and Neuropediatrics Center for Congenital Immunodeficiencies Vienna Austria

Department of Pediatrics Division of Clinical Immunology Allergology Respiratory Diseases and Rheumatology University Hospital Center Zagreb Zagreb Croatia

Octapharma Nordic AB Stockholm Sweden

Pediatric Department Children University Hospital in Bratislava Comenius University in Bratislava Faculty of Medicine Bratislava Slovakia

Primary Immunodeficiency Clinical Unit and Laboratory Department of Dermatology Venerology and Dermatooncology Semmelweis University Budapest Hungary

Research Department Belarusian Center for Pediatric Oncology Hematology and Immunology Minsk Belarus

The Jeffrey Modell Foundation New York NY USA

University of Medicine and Pharmacy Victor Babes Timisoara Romania

Citace poskytuje Crossref.org