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World Rare Disease Day is celebrated today. Half of Moldovan patients are children


https://www.ipn.md/en/world-rare-disease-day-is-celebrated-today-half-of-moldovan-7967_1103010.html

In the Republic of Moldova, there are about 2,500 patients with rare diseases. More than half of them are children. The data were presented on the occasion of World Rare Diseases Day that is observed on the last day of February, IPN reports.

Rare diseases are diagnosed at the Reproductive Health and Medical Genetics Center of the Mother and Child Institute and also at other national specialized institutions. For cases when the national system lacks diagnostic capabilities, especially at the genetic level, the institutions cooperate with foreign laboratories. In 2023, 61.5 million lei was allocated for 1,082 people diagnosed with 11 rare diseases, such as hemophilia, juvenile arthritis, pulmonary hypertension, epidermolysis bullosa, ulcerative colitis, and diabetes insipidus.

The treatment of patients with rare diseases is also supported by funding from mandatory health insurance funds. More specifically, they have access to 100% compensated medicines prescribed by the family doctor. Patients also benefit from expensive treatment in public healthcare institutions free of charge. A sum of 4.6 million lei was earmarked for 80 people with rare diseases. In 2023, for the first time, two international nonproprietary names of expensive drugs for the treatment of multiple sclerosis, Ocrelizumabum, and of cystic fibrosis, Dornaza alfa, were included in the list of compensated medicines.

In 2023, the Commission for the selection of patients with expensive treatment and/or checkups examined the files of eight persons diagnosed with various rare diseases and congenital malformations. The Ministry of Health reimbursed the expenses for the treatment for seven patients who submitted confirmatory documents regarding the received treatment in the amount of about half a million lei.

Next week, the Cabinet is expected to approve the National Rare Diseases Program for 2024-2028.