A virtual TIF Delegation visit with stakeholders from Serbia took place on 23 – 24 October 2020. The Delegation Team had the opportunity to participate in the “Caring for Rare” online regional conference of the Serbian Alliance for Rare Disorders (NORBS), and to meet with patients and other stakeholders active in the field in Serbia and across the Eastern European Region.
.An array of topics was addressed by the speakers, including access to treatment, the role of patient organisations, how the pandemic affects patients and holistic care.
During the meeting TIF had the opportunity to present the example of thalassaemia, as a multi-organ life-long disease requiring multidisciplinary and holistic care. Furthermore, TIF presented the unmet needs of thalassaemia patients across the European region as identified through work undertaken in the context of the THALIA project. The Conference, allowed the exchange of knowledge and facilitated collaboration between rare disease patient organisations, active in the Eastern European region.
- The exact number of patients in Serbia remains elusive on account of the unavailability of a national thalassaemia register. This impacts the visibility of thalassaemia to national health authorities.
- Improvement of knowledge and education, both for patients and healthcare professionals is imperative.
- Further strengthening of efforts for the creation of a thalassaemia patient community / organization is required to combat isolation and marginalisation.
As a result of the meeting, and to further drive momentum for thalassaemia in Serbia, TIF has reached out to the Minister of Health of Serbia and the Ambassador of Cyprus in Serbia requesting virtual meetings to discuss avenues for collaboration.