About Us
Mission
Be the medical care team with holistic mindset. Build a health care system that tends the body, mind, spirit, and community. In fighting this hereditary rare disease that EB patients are born with and are to endure with for the rest of their life, we aim to provide a health care system that “treats and teaches patients how to live with the disorder, balancing the body and spirit.”
Goals
Genetic Diagnoses and Hereditary Consulting
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Complete at least 40 genetic diagnoses for patients with rare hereditary skin diseases. Find the pathogenic genes and make treatment and care-taking plans accordingly.
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Actively involve in novel and individualized treatment tests.
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Optimize “the Special Out-patient Department for EB and Other Rare Hereditary Diseases,” and provide the most individualized health care service for patients and families across the country.
Wound Cares for the Body and the Spirit
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Organize annual workshops for dermatology health care workers.
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Build and develop a charity platform for skin medical materials.
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Host annual art-therapy camps and parental camps to strengthen patients’ family support.
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Build a psychological counseling system that is both professional and constant to provide timely support when a patients’ body and spirit is in need.
Develop Social Education and Resources
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Organize an annual public art exhibition as a dialogue platform for the patients and the society.
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Publish books on rare skin diseases.
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Work with Taiwan EB association, organize regular parent-teacher conferences and life education speeches in which patients and their family are invited as speakers at schools where EB patients attend.
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Make microfilms or documentaries on rare skin diseases.
Members
Julia Yu-Yun Le
Professor, Dermatology of NCKU
Dermopathalogist,
EB research
Yi-Chun Li
Assistant Research Fellow,
iWRR of NCKU
Psychologist,
Holistic Resources Fund,
Pastoral Care
Jia-Horung Hun
Physician,
Ophthalmology of NCKU Hospital
EB Ophthalmological research
Han-Tang Wang
Resident,
Dermatology of NCKU Hospital
EB Clinical Trial & Research Assistant
Hui-Min Su
Nurse,
iWRR of NCKU
EB Client management
Yi-An Chen
Secretary,
iWRR of NCKU
Administration Affairs
Chao-Kai Hsu
Associate Professer,
Dermatology of NCKU
EB & Keloid specialist
Yu-fen Yen
Dentist, Special Care Dental Center of NCKU Hospital
EB Oral cavity care
Hsin-Chin Lu
Dietitian,
Nutrition Dep. of NCKU Hospital
Nutrition assessment of EB
Ping-Chen Hou
Resident,
NCKU Hospital
EB Clinical Trial & Research Assistant
Ya-Ru Chuang
Research Assistant,
iWRR of NCKU
EB Research Technician
Ya-Ru Chuang
Nurse,
Dermatology of NCKU Hospital
Outpatient clinic nurse
John McGrath
Professor, Dermatology, Head of
St. John’s Institute of Dermatology
Senior Consultant
Hsin-Jou Wang
Physician,
Family Medicine of NCKU Hospital
General Medicine
Hui Ping Pan
Nurse,
Genetic Center of NCKU Hospital
Genetic Consultant
Yi-Kai Hun
Postdoctoral Researcher, Dermatology of NCKU
EB Research Assistant
Yu-Hsin Hung
Music Therapist,
iWRR of NCKU
Expressive Art Intervention
Pei-Wen Hsu
Nurse,
Dermatology of NCKU Hospital
Outpatient clinic nurse
Wei-ting Tu
Physician,
Dermatology of NCKU Hospital
Nail illness, EB care
Anna Jang
Associate Professor,
Biotechnology and Bioindustry Sciences ,NCKU
Cell Biology
Wen-Ting Lin
Resident,
Dentistry of NCKU Hospital
EB Oral cavity care
Wan-Rung Chen
Research Assistant, Dermatology of NCKU Hospital
EB Research Technician
Hao-Hsun Wu
Nurse,
Genetic Medicine of NCKU Hospital
Genetic Study Assistant
I-Ting Wu
Nurse,
Clinical Trial Center of NCKU Hospital
Clinical Trial Assistant