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| http://dx.doi.org/10.24171/j.phrp.2020.11.2.01 | DOI Listing |
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Identification of strengths and weaknesses of the healthcare system for persons living with rare diseases in Catalonia (Spain), and recommendations to improve its comprehensive attention: the "acERca las enfermedades raras" project.
Orphanet J Rare Dis
January 2025
Laboratory of Neurogenetics and Molecular Medicine, Center for Genomic Sciences in Medicine, Institut de Recerca Sant Joan de Déu, Únicas SJD Center, Hospital Sant Joan de Déu, Barcelona, Spain.
Background: Rare diseases (RDs) are a heterogeneous group of complex and low-prevalence conditions in which the time to establish a definitive diagnosis is often too long. In addition, for most RDs, few to no treatments are available and it is often difficult to find a specialized care team.
Objectives: The project "acERca las enfermedades raras" (in English: "bringing RDs closer") is an initiative primary designed to generate a consensus by a multidisciplinary group of experts to detect the strengths and weaknesses in the public healthcare system concerning the comprehensive care of persons living with a RD (PLWRD) in the region of Catalonia, Spain, where a Network of Clinical Expert Units (Xarxa d'Unitats de Expertesa Clínica or XUEC) was created and is being implemented since 2015.
Supporting equitable access to kidney transplant in remote Western Australia using continuous quality improvement.
Int J Qual Health Care
January 2025
Kimberley Renal Services, PO Box 1377, Broome, Western Australia 6725, Australia.
Background: Despite an epidemic of end-stage kidney disease in the Australian Aboriginal and Torres Strait Islander population, disparities in access to kidney transplantation persist. The journey to a successful kidney transplant is long, with an initial suitability assessment required before waitlist-specific activities begin. In an Aboriginal Community Controlled renal service, we aimed to: (i) design and implement a continuous quality improvement (CQI) approach to transplant suitability assessment, (ii) provide transplant suitability assessments for all patients of the service, (iii) describe what temporary contraindications to kidney transplantation should be the focus of health service improvements, (iv) explore participant experiences with the suitability assessment process, and (v) use our findings to inform pre- and post-transplant model of care development within Kimberley Renal Services.
View Article and Find Full Text PDFNew and Emerging Biological Therapies for Myasthenia Gravis: A Focussed Review for Clinical Decision-Making.
BioDrugs
January 2025
Department of Neurology, Neuroscience Clinical Research Center (NCRC) and Integrated Myasthenia Gravis Center, Charité - Universitätsmedizin Berlin, Corporate Member of Freie Universität Berlin and Humboldt-Universität zu Berlin, 10117, Charitéplatz 1, Germany.
Myasthenia gravis (MG) is a rare autoimmune disease characterised by exertion-induced muscle weakness that can lead to potentially life-threatening myasthenic crises. Detectable antibodies are directed against specific postsynaptic structures of the neuromuscular junction. MG is a chronic condition that can be improved through therapies, but to date, not cured.
View Article and Find Full Text PDFFrom Pioneering Discoveries to Innovative Therapies: A Journey Through the History and Advancements of Nanoparticles in Breast Cancer Treatment.
Breast Cancer (Dove Med Press)
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Immunology Unit, King Fahd Medical Research Center, King Abdulaziz University, Jeddah, 21859, Saudi Arabia.
Nanoparticle technology has revolutionized breast cancer treatment by offering innovative solutions addressing the gaps in traditional treatment methods. This paper aimed to comprehensively explore the historical journey and advancements of nanoparticles in breast cancer treatment, highlighting their transformative impact on modern medicine. The discussion traces the evolution of nanoparticle-based therapies from their early conceptualization to their current applications and future potential.
View Article and Find Full Text PDFBeyond the Physical: Weight Stigma and the Bariatric Patient Journey.
J Clin Med
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Department of Surgery, County Hospital, "Iuliu Hatieganu" University of Medicine and Pharmacy, 400139 Cluj-Napoca, Romania.
Obesity represents a global epidemic associated with significant health risks, including diabetes, cardiovascular disease, and certain cancers. Management strategies have evolved from focusing solely on weight reduction to emphasizing overall health improvements and mitigating associated risks. This narrative review analyzed the existing peer-reviewed literature across databases such as PubMed, Scopus, EMBASE, the Cochrane Library, and Google Scholar to examine the outcomes of bariatric surgery and its interplay with weight stigma.
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