Trabajo Social
Permanent URI for this collection
Browse
Browsing Trabajo Social by Subject "acceso a salud"
Now showing 1 - 1 of 1
Results Per Page
Sort Options
Item Percepción de los pacientes diagnosticados con una enfermedad huérfana y sus cuidadores frente a la aplicación de la ley 1392 de 2010 de enfermedades huérfanas, santiago de cali(2024) Franco Taborda, María Isabel; Prado Lucumi, Beatriz EugeniaIn Colombia, especially in Valle del Cauca and Santiago de Cali, there is regulation to care for patients with orphan diseases since only in 2010 was Law 1392 of 2010 created "Through which orphan diseases are recognized as special interest and norms are adopted to guarantee social protection by the Colombian State to the population suffering from orphan diseases and their caregivers. However, its compliance faces challenges, resulting in a lack of timely and adequate care for patients. The lack of specific laws and public policy focused on these diseases has led patients to resort to guardianships to guarantee their medical care. At the national level, more than 2,190 orphan diseases have been identified, with more than 500 people affected in Cali alone. Although management spaces and technical tables have been established to address these diseases, significant barriers persist. Effects include limited treatment due to lack of resources, information deficits for patients and caregivers, difficulties in diagnosis due to lack of research and development of therapies, and expensive and unaffordable treatments for low-income patients. This work aims to compile the perceptions of diagnosed patients and their caregivers regarding Law 1392 on Orphan Diseases. In this case, a small sample was taken given that it is a little-known topic and about which not much research is done, but the need arises if there are barriers. of access to health services and guarantees protection by the state.