LAUSR

First, an overview of the Romanian country profile to better understand the context in which our community of rare diseases has developed. Romanian population is just over 19 million people, more than 50% living in the urban area. Romania is one of the new 13 countries that joined the EU. The EU policy in the rare diseases (RDs) field impacted significantly on the Romanian health care policy landscape. So, new strategic directions and priorities for health system reform had to be established, including RDs (1). At the beginning of the pandemic, in March 2020, a health policy for RDs, a national plan for rare diseases and national healthcare programs for rare diseases (dietary and curative treatments), 24 centers of expertise dedicated to certain rare pathologies, the national network of medical genetics, and case management programs integrated into the community health nursing were active. The main organizer of the activities in the field of rare diseases was Romanian Alliance for Rare Diseases (RONARD). The total number of Romanians living with a rare disease is estimated to be up to 1 million, both children and adults. This estimate shows that while individual diseases may be rare, collectively are common. Thus, “the paradox of rarity” highlights rare conditions as a priority of the public health care system in Romania.