Rare Disease Commission at the Ministry of Health is already appointed and starts working.
Its creation was defined in Regulation No.16 of MH adopted at the end of July 2014 with initial deadline 12 September 2014. Commission is authorised to make proposals for inclusion of rare conditions in the List of Rare Diseases in Republic of Bulgaria and to suggest medical clinics for designation as centres of expertise for various rare diseases.
Compilation of list of rare conditions and designation of centres of expertise are important and long awaited steps towards providing modern and multidisciplinary care for the patients. They will also provide opportunity to collect up-to-date national-level information about the problems related to rare diseases and to create rare disease registries.
Patients organisation in collaboration with national health consultants may submit proposals for inclusion of their respective diseases in the List. Healthcare clinics which are willing to be designated as centres of expertise may apply for it at the Commission by presenting the required documentation.