認識我們 | 福爾摩沙的泡泡龍

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.”

使命

目標

Goals

Genetic Diagnoses and Hereditary Consulting

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.
Actively involve in novel and individualized treatment tests.
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.

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Wound Cares for the Body and the Spirit

Organize annual workshops for dermatology health care workers.
Build and develop a charity platform for skin medical materials.
Host annual art-therapy camps and parental camps to strengthen patients’ family support.
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

Organize an annual public art exhibition as a dialogue platform for the patients and the society.
Publish books on rare skin diseases.
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.
Make microfilms or documentaries on rare skin diseases.