People living with rare diseases (PLWRD) still face huge unmet needs, in part due to the fact that care systems are not sufficiently aligned with their needs and healthcare workforce (HWF) along their care pathways lacks competencies to efficiently tackle rare disease-specific challenges. Level of rare disease knowledge and awareness among the current and future HWF is insufficient. In recent years, many educational resources on rare diseases have been developed, however, awareness of these resources is still limited and rare disease education is still not sufficiently taken into account by some crucial stakeholders as academia and professional organizations. Therefore, there is a need to fundamentally rethink rare disease education and HWF development across the whole spectrum from students to generalists, specialists and experts, to engage and empower PLWRD, their families and advocates, and to work towards a common coherent and complementary strategy on rare disease education and training in Europe and beyond. Special consideration should be also given to the role of nurse coordinators in care coordination, interprofessional training for integrated multidisciplinary care, patient and family-centered education, opportunities given by digital learning and fostering of social accountability to enforce the focus on socially-vulnerable groups such as PLWRD. The strategy has to be developed and implemented by multiple rare disease education and training providers: universities, medical and nursing schools and their associations, professional organizations, European Reference Networks, patient organizations, other organizations and institutions dedicated to rare diseases and rare cancers, authorities and policy bodies.
Összefoglaló. A szerzők a SARS-CoV-2 vírus okozta járványnak (COVID–19) a haemostasist érintő, klinikailag fontosabb szempontjait tekintik át röviden. Felhívják a figyelmet a thromboemboliás szövődmények súlyossága és gyakorisága mögött levő patomechanizmus jellegzetességére, vagyis a Virchow-triász három alkotója időben egyszerre történő aktiválódására. A továbbiakban a kórállapotot és -lefolyást jelző fontosabb haemostasis laboratóriumi leleteket érintik, majd rátérnek a megelőzés és a kezelés kérdéseire, mely utóbbiakat a betegség súlyossági csoportokra történő bontásában tárgyalják, a jelenlegi nemzetközi irányelvekre támaszkodva. Végezetül egy összefoglaló táblázatban, a nemzetközi ajánlásokon alapuló, de a hazai szempontokat is figyelembe vevő, általánosan elfogadható antikoagulálási útmutatót igyekeznek adni, hangsúlyozva a kezelés személyre szabásának fontosságát. Summary. In the present paper the most important, clinically relevant haemostatic effects of SARS-Cov-2 virus infection (COVID-19) is reviewed and an awareness is raised of the unique pathomechanism which allows a concurrent activation of each side of the Virchows’ triad responsible for the aggressivity of thrombotic events in the disease. Subsequently characteristic haemostatic prognostic and staging laboratory results are discussed followed by a brief survey of anticoagulant prophylaxis and therapy in the different severity stages of the disease. Finally a brief guidance is given based on various international guidelines with an adoption of current Hungarian situation and emphasizing the importance of personalized decisions.
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