The working group set up to compile an updated list of rare diseases and to assess the costs associated with treatment and diagnosis hasn’t completed its duties even if the one-month time limit set by the authorities expired in the middle of January.
“At the moment, the analysis of the data presented by specialty commissions for determining the number of patients with rare diseases and estimating the amounts needed for covering the diagnosis and treatment of these patients continues,” the Ministry of Health, Labor and Social Protection said in a response to an inquiry made by IPN.
In the middle of last month, Minister of Health Viorica Dumbrăveanu said Moldova does not have now a National Rare Disease Control Program and an action plan concerning the prevention of rare diseases and the screening for them. But the patients with rare diseases should not suffer because the health system cannot meet their needs.
The minister noted that the major objective for the immediate period is to work out a National Rare Disease Control Program, as it is stipulated in the Government’s Action Plan.
There are over 8,000 rare diseases globally and these affect more than 350 million people. Over 95% of these cannot be treated and mostly have a genetic basis. Some 50% of these diseases are in children. In Moldova, the National Register of Rare Diseases includes about 100 diseases discovered during the past 25 years.
