The Konya Declaration for Patients with Primary Immunodeficiencies

Excerpt

Every year since 2004 when the J Project was launched, the growing interest and activity of devoted clinicians and scientists in Eastern and Central Europe (ECE) and elsewhere and their efforts to make a difference in the care of patients with primary immunodeficiencies (PIDs) in their regions and countries are clear [1]. A few Central European countries have now progressed to such an extent that they are approaching the professional standards of Western Europe in terms of diagnosis, clinical care, and education [2]. By contrast, in some countries, particularly in Central Asia, PID diagnostics and care are no further advanced than they were in Central Europe 30–40 years ago. There are also remarkable regional differences in patient management, particularly in large countries, such as Russia. One of the biggest challenges facing us now is providing differential assistance to achieve advances throughout the whole J Project area (Fig. 1), which currently has markedly different levels of complex PID care. Maybe we can take inspiration from the Turkish dervishes. During their unique dancing performance, they hold one of their extended arms with the palm up, suggesting receiving, and the other arm with the palm facing downwards, suggesting giving. We must continually encourage those centers and groups with advanced levels of PID care to share their knowledge with those most in need of it.

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