Representatives of SUPRAM participated at the Second National Conference on Rare Diseases, which was held on 17. and 18. April 2015 in Belgrade, Hotel Hyatt Regency, Cristal Hall. Conference was organized by National Organization for Rare Diseases – NORBS and Society of Medical Biochemists of Serbia and supported by Ministry of Health of The Republic of Serbia.
President of SUPRAM, dr Marta Sjenicic, presented the goals and the first results of the project Equitable Policies and Services for Rare Disease Patients and draw attention that more equitable health care and social security system is necessary.
The participants were greeted at the beginning of the conference, by prof. dr Berislav Vekic, state secretary in Ministry of Health,dr Perisa Simonovic, assistant director of Institute for Public Health Milan Jovanovc Batut, dr Sasa Jacovic, director of Agency for Medicines and Medical Devices Agency of Serbia, prof. dr Svetozar Damjanovic, president of National Expert Commission for Rare Diseases, prim. dr Zorica Sumarac, member of working group for developing of National Strategy for Rare Diseases and Marija Joldic, president of National Organization for Rare Diseases – NORBS. This was fallowed by workshops on different topics: Centers for rare diseases, Registers of Rare Diseases and Orphanet, Challenges of diagnostic and scientific researches, Access to orphan medicines, off-label and clinical researches, Role of NGOs in providing support to the patients and members of their families. The special session Doctors for doctors was the opportunity for medical professionals to discuss the state of the art regarding rare diseases in Serbia.
Participants especially draw attention that patients face difficulties with getting diagnosis and by not being recognized in system of social protection. Also, since there is no Register for rare disease it is not possible to determine the number of patients, nor issues of diagnosing and medical treatment could be solved. Serbia still does not have Strategy for Rare Disease, but its adoption is expected in 2015. Experts from SUPRAM are providing professional support to the members of the Working Group for developing of the Strategy for Rare Diseases, and representatives of NORBS are also members of the Working Group.
Project is financed by the EU.