One in 19 Romanians has a rare disease, most don't get proper diagnosis

Over a million of Romania's 19 million inhabitants have a rare disease, and three quarters of them are children. Most of the diseases are early onset genetic disorders, according to data from the National Alliance for Rare Diseases in Romania. Every day, at least one Romanian thought to have a rare disease gets admitted to the hospital. Statistics show nine out of ten Romanians don't get the adequate treatment as they are not diagnosed correctly or because they are diagnosed too late. Romania has only 75 specialists in genetics, and most of the country's counties don't have any. Similarly to elsewhere in the world, the country lacks rare disease research centers.

Rare diseases appear at 3 to 4 percent of births, according to the European Commission statistics. The bulk of rare diseases are inherited – 80 percent, but they can also be autoimmune, metabolic, toxic and infectious diseases, leukemia or other rare cancers. In Europe, over 30 million people have rare health problems, which is 8 percent of the population. Specialists have identified between 6.000 and 8,000 rare diseases worldwide. European statistics show one in four patients with rare diseases has to wait over 30 years to receive a correct diagnosis. The last day of February is the International Day of Rare Diseases. editor@romania-insider.com