[HTML][HTML] Current state of rare disease registries and databases in Australia: a scoping review
R Ruseckaite, C Mudunna, M Caruso… - Orphanet Journal of …, 2023 - Springer
Abstract Background Rare diseases (RDs) affect approximately 8% of all people or> 400
million people globally. The Australian Government's National Strategic Action Plan for Rare …
million people globally. The Australian Government's National Strategic Action Plan for Rare …
[HTML][HTML] Psychosocial impact at the time of a rare disease diagnosis
J Benito-Lozano, G Arias-Merino, M Gómez-Martínez… - Plos one, 2023 - journals.plos.org
Over half of all persons with rare diseases (RDs) in Spain experience diagnostic delay (DD)
but little is known about its consequences. This study therefore aimed to analyze the …
but little is known about its consequences. This study therefore aimed to analyze the …
Assessing Awareness of Rare Diseases Among Healthcare Professionals: An Exploratory Study About Sudan
NAE Ahmed - 2024 - search.proquest.com
This study focuses on healthcare professionals' awareness regarding rare diseases in
Sudan. Emphasizing the notable deficiency in awareness and knowledge among healthcare …
Sudan. Emphasizing the notable deficiency in awareness and knowledge among healthcare …
[HTML][HTML] Decisiones médicas en enfermedades raras: de su definición estadística a su comprensión social
N Schöngut-Grollmus, MA Energici - Saude e Sociedade, 2021 - SciELO Public Health
Este ensayo teórico pretende analizar las decisiones médicas en el caso de las
enfermedades raras. Una decisión médica es un proceso que orienta la producción de un …
enfermedades raras. Una decisión médica es un proceso que orienta la producción de un …
[PDF][PDF] Implementación de la Terapia Génica en Colombia: Un reto multisectorial de grandes dimensiones
I Zarante, A Ruiz - researchgate.net
La terapia génica consiste en la modificación en la secuencia codificante del ADN de un
paciente con la intención de realizar la corrección de un defecto génico. Existen varias …
paciente con la intención de realizar la corrección de un defecto génico. Existen varias …