Conţinutul numărului revistei |
Articolul precedent |
Articolul urmator |
312 6 |
Ultima descărcare din IBN: 2024-02-19 12:09 |
Căutarea după subiecte similare conform CZU |
616-039.42-082 (1) |
Patologie. Medicină clinică (6963) |
SM ISO690:2012 TURCU, Oxana, CÎRSTEA (BUGA), Olga, DOLAPCIU, Elena, REVENCO, Ninel, STASII, Ecaterina, PAUN, Grigore, ANDRIEŞ, Lucia, ROTARU, Valentina, JIVALCOVSCHI, Ala. Abordarea holistică a pacienților cu maladii rare în cadrul modelului centralizat de îngrijiri. In: Buletin de Perinatologie, 2022, nr. 1(93), pp. 80-84. ISSN 1810-5289. |
EXPORT metadate: Google Scholar Crossref CERIF DataCite Dublin Core |
Buletin de Perinatologie | ||||||
Numărul 1(93) / 2022 / ISSN 1810-5289 | ||||||
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CZU: 616-039.42-082 | ||||||
Pag. 80-84 | ||||||
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Rezumat | ||||||
Nowadays, over 30 million Europeans living with a rare disease and their family members (often the main caregivers) are marginalized, with little information about both disease and treatments and a high level of psychological, social and economic vulnerability. Without a correct diagnosis, patients and their families are at risk of not benefiting from interventions that may improve outcomes like a holistic approach of interdisciplinary team in a specialized center. In the Republic of Moldova, the Outpatient Center for Cystic Fibrosis and other Rare Diseases is a functional structure that has the role of coordinating the entire activity related to patients with cystic fibrosis, primary immunodeficiencies, including the monitoring, evaluation and recommendation of specific preparations available in the country. |
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