The Thalassaemia International Federation (TIF) has delegated an expert team to visit Serbia, on the 13 – 14 December 2018, which had the opportunity to participate in the Eastern European Conference for Rare Diseases, organized by the National Organisation for Rare Diseases (NORBS).
The delegates, Dr. Michael Angastiniotis, Medical Advisor, and Mrs. Lily Cannon, TIF’s Operations Manager, attended the conference designed for countries in the eastern regions of Europe, whether members of the EU or not.
The TIF team represented both the interests of TIF to improve services for thalassaemia across the continent, but also the RD movement of Cyprus.
Main issues highlighted:
- The need to develop national policies to deal with rare diseases disorders, whose management can be very deficient due to lack of professional experience and the requirement of expensive long-term therapies,
- Each country’s delegation described the current state of development of various measures that compose a public health strategy, such as the necessity for national registries from which epidemiological data can be drawn to support policy making, the existence of national plans and committees, the need for expert or reference centres and their effective networking, the inclusion of rehabilitation services, psycho-social and budgetary support, etc.
- As far as clinical care is concerned, the need for multidisciplinary care and the access to orphan drugs and new technologies were particularly emphasized. A discussion on joint procurement for the eastern European countries was made but with no final steps to be taken.