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Delegation visit to Sweden – 23-25 March 2019

TIF’s delegates 3rd visit to Sweden took place during March 23-25, 2019, when Dr. Androulla Eleftheriou, TIF’s Executive Director, and Dr. Michael Angastiniotis, TIF’s Medical Advisor, held a series of meetings with patient associations’ representatives, individual patients and physicians in the field of haemoglobinopathies.

The main objective was to learn about the quality of life of patients with haemoglobinopathies in Sweden, and identify avenues of attaining the support of and closer partnership with TIF.

 

Defining future steps:

  • TIF to work with Swedish doctors, in order to develop a position paper promoting the improvement of thalassaemia care in Sweden to be subsequently delivered to the National Healthcare Authorities.
  • TIF to pursue the translation of the International Guidelines for the management of haemoglobinopathies in Sweden, with the aim to facilitate the work of local physicians.
  • Promote a national registry combined with the patients’ healthcare records for thalassaemia population, to be followed subsequently by SCD, as a means of guiding Health authorities and providers to plan cost-efficient services.
  • Encourage and support members of the patients’ community to uptake the ‘’Thal e-Course’’ for patients and parents, available on TIF’s e-Academy.
  • Foster the participation of one (1) doctor in the Renzo Galanello Fellowship Programme, as recommended by the NHA.
  • TIF will also invite these patients to its upcoming Capacity Building Workshop, to be organized during October 2019 in Germany.