The 2nd EUROPLAN National Conference took place on 08-09 November 2017 in Belgrade, Serbia. NORBS – Rare Diseases Serbia, was the organiser.
NORBS has been involved in expert committee and Task Force of the Ministry of Health to work on the design and development of the Serbian national plan for rare diseases, over the past seven years. As of November 2017, the draft plan is about to be finalised and adopted.
The 2nd EUROPLAN conference placed an emphasis on the following priority issues:
- Centres of Expertise for Rare Diseases
Serbian Ministry of Health designated five Centres of Expertise (CEs) who correspond to hospital and clinics. The participants agreed that CEs’ designation criteria need to be refined in order to identify and accredit hospital units with a specific expertise on a group of rare pathologies. The CEs, once designated, will need to be financially supported to provide good care and join European Reference Networks in the future.
- Improving access to RD treatments
Efforts have been made in this area but patients’ needs in terms of treatments remain very important.
The participants discussed the need for reviewing the current system for a better distribution of available funding and for providing additional funding for orphan drugs as well as for supplements and medical devices.
- Specialised social services for People Living with a Rare Disease (PLWRD)
“The area in which the least progress was made in Serbia in relation to rare diseases in the past decade is social services and integration of PLWRD in existing social welfare practices”.
Based on the European recommendations and initiatives abroad, discussions need to be continued with relevant institutions to first recognise the specific needs of PLWRD to adjust current policies.
Read more: EUROPLAN Conference Report