The Konya Declaration for Patients with Primary Immunodeficiencies

Abstract

Primary immunodeficiency (PID) disorders constitute a major and growing health problem in individuals of all ages, worldwide. They may lead to severe, life-threatening diseases and death in early childhood or prolonged diseases with a later onset. Much has been accomplished in Eastern and Central Europe (ECE) over the last 15 years, under the auspices of the J PROJECT and in collaboration with national and international organizations. The major aims of this project were to increase awareness of these conditions among physicians and to improve medical training in this domain. However, much remains to be done if we are to achieve all the goals outlined in 2004. The last decade has seen an unprecedented increase in our knowledge of the clinical, immunological, and genetic features of PID disorders. The number of known PID disorders now exceeds 450, and more than 400 PID disorder-causing genes have been described.

PID expert representatives of the J PROJECT met in Konya, Turkey, on December 4–7, 2019, for the 3rd J PROJECT Congress. They unanimously agreed on a revision of the recommendations of the J PROJECT laid down in the Antalya Declaration, 2014, urging an update of their presentation and approval for implementation in ECE countries and elsewhere, throughout the world. The participants at the Konya Congress as well as the J Project Steering Committee expressed their long-term commitment and determination to achieve the goals defined below.