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.
Download full-text PDF |
Source |
|---|---|
| http://dx.doi.org/10.1111/cea.14623 | DOI Listing |
Publication Analysis
Top Keywords
Similar Publications
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 PDFAngioedema in a 9-year-old Child after Dental Treatment: A Rare Complication Explored through a Case Report.
Int J Clin Pediatr Dent
November 2024
Department of Pediatric and Preventive Dentistry, Indira Gandhi Institute of Dental Sciences, Sri Balaji Vidyapeeth, Puducherry, India.
Aim And Background: Angioedema is a nonpruritic swelling that typically affects the skin, mucous membranes of the face, and perioral soft tissues. It can be life-threatening, but it is usually not and can be treated conservatively unless the airway is compromised. This paper seeks to illuminate a rare case of hereditary angioedema (HAE) onset following dental procedures in a 9-year-old Indian boy.
View Article and Find Full Text PDFAdvances in the Pathogenesis of Hereditary Angioedema.
Zhongguo Yi Xue Ke Xue Yuan Xue Bao
December 2024
Department of Allergy, PUMC Hospital,CAMS and PUMC,Beijing 100730,China.
Hereditary angioedema (HAE) is a rare,unpredictable,autosomal dominant disorder characterized by recurrent swelling in subcutaneous and submucosal tissue.In recent years,the pathophysiology and pathogenesis of HAE have been continuously studied and elucidated.In addition to the genes encoding complement 1 esterase inhibitors,new pathogenic variants have been identified in the genes encoding coagulation factor Ⅻ,plasminogen,angiopoietin-1,kininogen,heparan sulfate 3-O-sulfotransferase 6,and myoferlin in HAE.
View Article and Find Full Text PDFAssesment of Salivary and Serum Levels of HBD2 in Patients with Chronic Angioedema.
J Clin Med
December 2024
Department of Pulmology, Special Hospital for Pulmonary Diseases, 10000 Zagreb, Croatia.
: Human β-defensin 2 (HBD2) is a protein that plays an important role in activating the immune system by modulating spinal pathways and the inflammatory response. According to previous research, HBD2 was proven to be important in chronic spontaneous urticaria (CSU) (their values were significantly elevated in CSU patients, with a significant correlation between HBD2 levels and the percentage of peripheral basophils, suggesting that elevated HBD2 levels may be a potential marker of basophil and mast cell activation), which led us to additional research on the HBD2 molecule in isolated chronic angioedema. The aim of this research is to examine HBD2 values in the saliva and serum of patients with isolated angioedema, as a potential biomarker of the disease.
View Article and Find Full Text PDFWant AI Summaries of new PubMed Abstracts delivered to your In-box?
Enter search terms and have AI summaries delivered each week - change queries or unsubscribe any time!