In Romania, National Institute of Public Health, in collaboration with the Ministry of Health's specialty commissions and the associations of patients with rare diseases, plans to develop the National Registry of Rare Diseases, in line with the recommendations of the European Council on action in this field, according to a press release from the Public Health Directorate of Bucharest Municipality on the occasion of Rare Disease Day, celebrated on February 29th. According to the cited source, there are 8,000 people registered with rare diseases in Romania, but it is estimated that the number is much higher.
The National Registry of Rare Diseases is an essential resource for better understanding and responding to the complex problems raised by rare diseases. The registry offers the possibility to document the natural history of the disease, by tracking its symptoms, results, and variability. It is an opportunity to monitor the safety of treatment and evaluate the effectiveness of treatments in real-life situations," the same source said. According to DSPMB, a rare disease registry is also "an opportunity to actively involve" patients, to obtain direct information from them, so that the results are in line with their needs and experiences, and it also allows for the generation of scientific evidence for personalized medicine. According to estimates, approximately 5% of the world's population is affected by a rare disease, which means that around 300 million people live with these conditions, almost equivalent to the population of the United States of America. The over 6,000 identified rare diseases are characterized by a wide variety of symptoms, which vary not only from disease to disease but also from patient to patient suffering from the same disease. At the same time, 72% of rare diseases are genetic, and the others are the result of viral or bacterial infections, allergies, environmental factors, or rare cancers. Many rare diseases are chronic and progressive, which leads to a low quality of life for patients, isolation, and stigmatization. 70% of rare genetic diseases begin in childhood, and almost one in five cancers is estimated to be a rare cancer, with about 200 types of rare cancers. International Rare Disease Day is organized annually to increase awareness about rare diseases, including their impact on the lives of patients and their families. It offers everyone (patients, their families, caregivers, health professionals, researchers, clinicians, decision-makers, industry representatives, and the general public) the opportunity to advocate together with the over 1,000 patient associations from 74 countries for equity, access to diagnostic and treatment services, and social opportunities for people living with a rare disease. Source: agerpres.ro If you appreciate this news, we invite you to join the community of readers on our Facebook page by clicking Like!
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