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Delegation visit to Serbia – October 2018

 

In the studies of the late Prof Efremov[1], which included all regions of old Yugoslavia, the carrier rate of beta thalassaemia in Serbia was determined to be at least 1.2%, and, in studying the molecular epidemiology of the country, it has been established that 30% of cases are due to the Hb Lepore, constituting the most common cause of the thalassaemia phenotype in Serbia[2].

Thus, although Serbia presents a relatively low prevalence of thalassaemia genes in the indigenous population, it is, at the same time, a major transit country for migrants on their route to Europe. Hence, its national healthcare system potentially faces substantial new challenges which have not yet been anticipated.

Therefore, as part of its activities in the context of the ‘THALassaemia In Action (THALIA)’ project, mainly focusing on addressing the current gaps in the knowledge and management of thalassaemia and other haemoglobin disorders in Europe, TIF has organized a delegation visit to Serbia.

TIF delegation team, consisted of Dr. Michael Angastiniotis, TIF’s Medical Advisor, and Mr. Anton Skafi, an esteemed member TIF’s Board of Directors. The team had the opportunity to visit and meet with representatives of:

  • The Institute of Molecular Genetics and Genetic Engineering
  • The University Children’s Hospital
  • The National Organization for Rare Diseases of Serbia (NORBS)

 

Next steps to be taken:

The TIF delegation team, together with the national stakeholders, have agreed to consolidate efforts and work towards a mutually acceptable direction in the following fields:

  • Development of international collaborations, particularly between the Institute of Molecular Medicine and Ithanet,
  • Enrichment of epidemiological national data, through the aforementioned partnerships,
  • Creation of a national registry for thalassaemia, despite its rarity, as a means of identifying future national needs,
  • Encourage patient support and empowerment, with the support of TIF and under the wing of NORBS, and the establishment of a patient/parent association,
  • Continuation of collaboration with all stakeholders to provide further guidance and assistance, as and when requested.

 

[1] Efremov GD. Hemoglobinopathies in Yugoslavia: an update. Hemoglobin. 1992; 16(6): 531-54

[2] Pavlovic S, Urosevic J, Poznanic J, Perisic LJ et al. Molecular basis of thalassaemia syndromes in Serbia and Montenegro. ACTA Haematol. 2005; 113: 175-180 doi.10.1159/000084447