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Advocacy in Action: International Patient Group Improves Hereditary Angioedema Diagnosis and Care Across the Asia-Pacific.
Clin Exp Allergy
January 2025
Division of Rheumatology and Clinical Immunology, Department of Medicine, Queen Mary Hospital, The University of Hong Kong, Hong Kong, China.
This study demonstrates that patient advocacy groups significantly enhance medication availability and improve diagnosis of hereditary angioedema (HAE), particularly in emerging economies within the Asia-Pacific region. This study supports integrating patient advocacy group involvement into management guidelines, emphasising their role in improving access to diagnostics and treatment for HAE.
View Article and Find Full Text PDFThe adolescent experience of hereditary angioedema: a qualitative study of disease burden and treatment experience.
Orphanet J Rare Dis
January 2025
Ionis Pharmaceuticals, Inc, 2855 Gazelle Court, Carlsbad, CA, 92010, USA.
Background: Hereditary angioedema (HAE) is a rare, autosomal dominant disorder causing swelling attacks in various parts of the body, resulting in impacts on health-related quality of life (HRQoL). The symptoms of HAE and its impacts on HRQoL have been well-documented in adults; however, relatively little is known about the experiences of adolescents with HAE. The objective of this study was to use qualitative interviews to investigate how adolescents experience HAE symptoms and how HAE impacts their HRQoL.
View Article and Find Full Text PDFImmunoglobulin replacement therapy in patients with primary and secondary immunodeficiencies: impact of infusion method on immunoglobulin-specific perceptions of quality of life and treatment satisfaction.
Allergy Asthma Clin Immunol
January 2025
Immune Deficiency Foundation, Towson, MD, USA.
Background: Immunoglobulin replacement therapy (IgRT) is the current standard of care for primary antibody deficiency patients (majority of all primary immunodeficiency (PID) diseases), with growing real-world evidence supporting use for secondary immunodeficiency (SID) patients. Infusion methods and practices can affect patients' satisfaction with their treatment and perception of their health-related quality of life.
Methods: An online survey of US patients with PID and SID was conducted.
European biologic training course for type 2 inflammation by EUFOREA in 2024: key facts and lessons learned.
Front Allergy
December 2024
Department of Otorhinolarynogology and Head/Neck Surgery, Amsterdam University Medical Centres, Location AMC, University of Amsterdam, Amsterdam, Netherlands.
The European Forum for Research and Education in Allergy and Airways diseases (EUFOREA) organized the first European Biologic Training Course (EBTC) in Brussels on 1st March 2024. The aim of this hybrid EBTC including both face-to-face and web-based participation was to address the educational needs of physicians dealing with asthma and Chronic Rhinosinusitis with Nasal Polyps (CRSwNP) on the clinically relevant aspects of diagnosing and treatment with biologics. EUFOREA is an international non-for-profit organization forming an alliance of all stakeholders dedicated to reducing the prevalence and burden of chronic respiratory diseases through the implementation of optimal patient care via educational, research, and advocacy activities.
View Article and Find Full Text PDFRandomized Pilot Trial of the Text-Based Adherence Game for Ghanaian Youth with HIV.
AIDS Behav
December 2024
Department of Psychiatry, Rhode Island Hospital, Providence, RI, USA.
This study examined the feasibility, acceptability, and preliminary efficacy of a mobile intervention called the Text-Based Adherence Game (TAG). TAG aimed to improve HIV treatment adherence among young people with HIV (YPWH) in Ghana. Participants, YPWH aged 18 to 24, were recruited from an HIV clinic in Kumasi, Ghana where study procedures were conducted.
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