Health Minister Alexandru Rogobete said on Saturday that, for rare diseases, concentrating expertise saves time, suffering and, sometimes, lives.
"Today, on the International Day of Rare Diseases, I participated in the National Conference on Mastocytosis and Mast Cell Diseases (MCAS), organized at the University Emergency Hospital in Bucharest - an event that marks an important step for patients with this rare disease and for Romanian medicine. Together with the hospital management, representatives of the College of Physicians and some of the most respected specialists in the field, I witnessed the launch of essential tools: the National Electronic Registry of Mastocytosis, the National Guide to Mastocytosis and the presentation of the Mastocytosis Network. Mastocytosis is a rare, complex disease that requires an interdisciplinary approach and highly specialized expertise. In Romania, this expertise is concentrated within the European Center of Excellence in Mastocytosis Romania, which operates at the University Emergency Hospital in Bucharest and represents a landmark at the European level," Alexandru Rogobete wrote on his Facebook page.
According to the minister, the Electronic Mastocytosis Registry is an essential scientific tool that provides real data about patients, the evolution of the disease and the effectiveness of therapies.
"Without data, we cannot build solid public policies. With accurate data, we can base decisions, including for the inclusion of new drugs in the list of reimbursed ones. The Mastocytosis Network - with its pediatric and adult components - means coordination, clear pathways for the patient and access to centers of excellence where expertise is superior. For rare diseases, the concentration of competence saves time, suffering and, sometimes, lives," says Rogobete.
He adds that, as Minister of Health, he supports the consolidation of centers of excellence in rare diseases, the development of national registries and the expansion of access to innovative therapies for patients with mastocytosis.
"Patients with rare diseases need more than empathy. They need organization, rigor, science and responsible decisions. Trust is good for us," says Alexandru Rogobete.
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