Healthcare Models for Rare Diseases: A Systematic Review of the Literature
http://orcid.org/0000-0002-0799-3303
Camilo Castañeda Cardona
http://orcid.org/0000-0001-6837-8809
María Alejandra Chirveches Calvache
http://orcid.org/0000-0002-5951-719X
Alberto Aroca
http://orcid.org/0000-0003-3727-0349
Margarita Otálora Esteban
http://orcid.org/0000-0003-3174-1592
Diego Rosselli
http://orcid.org/0000-0003-0960-9480
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Low prevalence diseases require management models different from those used in other conditions. is work was intended to gather international experiences on this issue. Searches were made in many indexed literature databases as well as in those with gray literature. A panel of experts from different disciplines checked the abstracts and their potential adaptation into the Colombian context. The initial search retrieved 5604 references and the manual search added other 31 references. At the end, 78 articles provided useful information for the analysis. The results allow to state that a management model consists of
several components, to wit: policies, legislation and administrative aspects; definition and coding of the diseases; research and education; specialized centers; excellence centers and service networks; diagnosis, screening , prevention, and promotion; orphan drug inclusion; rehabilitation and palliative care; organizations of patients and support groups or networks; and social-sanitary support (labor and educational inclusion).
rare diseases, drugs in the pharmaceutical ser vice specialized component, organization and administration, patient ser vice managementenfermedades raras, medicamentos del componente especializado de los ser vicios farmacéuticos, organización y administración, manejo de atención al pacientedoenças raras, medicamentos do componente especializado dos ser viços farmacêuticos, organização e administração, manejo de atenção ao paciente
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