Patients with hereditary angioedema (HAE)

Hereditary Angioedema (HAE) is a life-threatening rare primary immunodeficiency. Since the 2003 index case in Taiwan, MacKay Children’s Hospital has established a precision care system for all HAE subtypes. By integrating genetic testing, digital monitoring (HAE App and 24-hour LINE support), and long-term prophylaxis, we have significantly reduced attack frequencies, achieving the goal of "Zero Emergency Health." Furthermore, the team has actively advanced national policies, successfully facilitating orphan drug approvals and health insurance reimbursement, comprehensively enhancing HAE care quality and accessibility in Taiwan. MacKay Children’s Hospital is the sole HAEi-accredited center in Taiwan, and Dr. Shyh-Dar Shyur is the nation’s only certified HAEi physician. The team co-authored the 2010 WAO HAE global guidelines and has published numerous peer-reviewed papers. Clinical innovations encompass standardized care pathways, digital monitoring, family screening, and self-management education, alongside active patient advocacy and interdisciplinary collaboration. This model exemplifies a replicable paradigm for precision medicine and the localized application of global knowledge in holistic care.

• Innovative Care Model | Digital Platform × Patient Community

• Established the first HAE Diagnosis & Research Center, developing Taiwan’s first national clinical guidelines and standardized care protocols.

• Integrated genetic testing, preventive and acute treatment, and digital monitoring (HAE App, LINE support) to provide real-time, comprehensive care.

• Founded Taiwan’s first HAE patient association, combining family screening and patient education to enhance self-management.

• Mackay Children’s Hospital is the only HAEi-accredited center in Taiwan, participating in international guideline development and serving as a model for HAE care in Asia.

• Total HAE patients under holistic management are 26

• Family pedigree analsysis and follow-up for 49 individuals

• Rare disease certification cases: 25

• Provides 24-hour real-time consultation

• Organizes annual patient association educational events

• Proportion of nationwide reported cases: 54.34%

• Genetic testing completion rate: 100% (49/49 patients)

• Prophylactic treatment coverage for rare disease: 77.78% (7/9 patients nationwide)

• Case management follow-up completion rate: 100%

• Annual healthcare staff training participation: over 100 participants

• Patient association event participation rate: 100%

• Emergency visit rate for acute attacks: 0%

• Emergency readmission rate: 0%

• Complication rate related to prophylactic treatment: 0%

• Case management follow-up completion rate: 100%

• Adverse event reporting rate: 0%

• Patient self-administration of rescue injection education coverage: 100%

• Overall patient satisfaction: 100%

• Patient association participation rate: 80%

• Case follow-up rate: 100%

• International Accreditation: Mackay Children’s Hospital, Taiwan – the only HAEi-accredited center in Taiwan.

• International Representative: Dr. Shyh-Dar Shyur at Mackay Children’s Hospital – designated HAEi representative physician.

• International Participation: Contributed to the development of the 2010 WAO HAE guidelines.

• International Collaboration: Dr. Shyh-Dar Shyur – designated HAEi physician collaborating with HAEi global member organizations for visiting HAE patients.

• Clinical Innovation: Established Taiwan’s HAE Precision Treatment Excellence Center, improving patient outcomes and quality of life.

• Enhance domestic HAE care quality and patient safety

• Establish standardized diagnosis and genetic testing processes

• Improve patient treatment outcomes and quality of life

• Ensure high compliance in case management follow-up

• Promote professional competence and knowledge transfer among medical staff

• Strengthen international collaboration and alignment with clinical guidelines

• Support sustainable healthcare development and rare disease policy implementation