In the Republic of Moldova, every year more than 60 million lei are allocated for the treatment of patients suffering from rare diseases. This includes more than 2,500 children who need special attention and support. Discussion of this problem became the central issue at the national conference organized by the Ministry of Health, State Medical University. Nicolae Testemitanu, Pediatric Society of the Republic of Moldova, National Center for Reproductive Health and Medical Genetics, together with the Association for the Rehabilitation of Children with Phenylketonuria, the Public Association S.O.S Autism and the Public Association Copii Ploii.
At the opening of the event, the head of the Department of Pediatrics of the State Medical University. N. Testemitanu, Ninel Revenco, emphasized the need to raise awareness about the seriousness of rare diseases among decision-makers, medical professionals and society at large. Public awareness plays a key role in improving the quality of life of patients with rare diseases. Physicians must actively advocate for the interests of these children and emphasize that investing heavily in children’s health is an investment in the future.
Ninel Revenko also noted the consequences of the Chernobyl disaster, which affect many children and manifest themselves in various rare diseases, such as spinal amyotrophy, immunodeficiencies and autism spectrum disorders. She emphasized that the introduction of neonatal screening for rare diseases such as hypothyroidism and inborn errors of metabolism is an important step to improve the diagnosis and treatment of patients.
The director of the Institute of Mother and Child, Sergiu Gladun, who was present at the event, emphasized that the number of patients with rare diseases registered in Moldova ranges from 6 to 8 thousand people, and 75% of them are children. Gladun also noted that a third of children with rare diseases die in the first year of life, and the rest suffer from various complications.
In 2023, about 61.5 million lei were allocated for the treatment of 1082 patients with rare diseases. This includes 100% compensation for the cost of medications prescribed by family doctors and free treatment in public health institutions.
