“Guess What Fei-Fei Has?” – NCKU USR Partners with Cheng Mei Materials to Promote Rare Disease Education-國立成功大學永續發展SDGs

The National Cheng Kung University (NCKU) Ministry of Education University Social Responsibility (USR) project team, “From Clinic to Community: Life Hospitality for the Bubble Dragon Community,” held a picture book launch for Guess What Fei-Fei Has? at the NCKU Liwen Bookstore on November 27. The story centers on understanding, empathy, and self-realization, told from the perspective of a child with the rare condition Hereditary Epidermolysis Bullosa (“Bubble Dragon (泡泡龍)”), giving readers insight into the courage and inner voice of children facing the disease. Supported by Cheng Mei Materials, the picture book will be donated to elementary schools, kindergartens, and libraries, helping more children learn to appreciate differences, respect life, and grow in an inclusive environment.

Guess What Fei-Fei Has? was planned by the International Wound Repair and Regeneration Center (iWRR) at NCKU, with artist Ms. Ruo-Chun Hsu (徐若鈞) leading the project and collaborating with children with Hereditary Epidermolysis Bullosa (“Bubble Dragon”) and their siblings in the creative process. Hsu herself is a Bubble Dragon patient, a two-time recipient of the Presidential Education Award, and was named one of the Top Ten Outstanding Young Women of the Republic of China (26th edition). Drawing from her life experience, she tells the story of the protagonist “Fei-Fei,” conveying the authentic feelings of children with Bubble Dragon, including their longing to be “just like everyone else” and their desire not to be singled out. Supported by Cheng Mei Materials, the picture book’s publication represents an important milestone in university–industry collaboration to advance rare disease education.

The picture book launch event was attended by distinguished guests, including Dr. Hsiu-Chi Cheng (鄭修琦), Dean of the NCKU College of Medicine; Dr. Ching-Wei Lee (李經維), Director of NCKU Hospital; Dr. Chao-Kai Hsu (許釗凱), Associate Dean for Medical Education at NCKU College of Medicine and Director of the NCKU Center for Genetics; Ms. Yen-Yi Sung (宋妍儀), Chairperson of Cheng Mei Materials; Ms. Wen-Hsin Chang (張文馨), Chairperson of the Taiwan Hereditary Epidermolysis Bullosa (“Bubble Dragon”) Association; as well as patients with Bubble Dragon, their families, and NCKU faculty and students. The event included a ceremony to present certificates of appreciation and book donations, with Cheng Mei Materials receiving a certificate of appreciation, and book donations accepted by Ms. Chia-Yu Chang (張家瑜), Section Chief of the Early Childhood Education Division of the Tainan City Education Bureau, and Ms. Li-Hsin Wang (王麗心), Secretary of the Tainan Public Library.

Dean Hsiu-Chi Cheng stated that the College of Medicine is dedicated to advancing human health. NCKU has achieved breakthroughs in treating Bubble Dragon, including understanding disease mechanisms, introducing stem cell therapies, and addressing nutritional needs to improve patients’ quality of life. The College also carries an educational mission to help students understand and respect life and empathize with patients. The Bubble Dragon picture book transforms professional medical knowledge into easily understandable content, and he expressed gratitude to Cheng Mei Materials for supporting its publication. Dr. Ching-Wei Lee of NCKU Hospital noted that as medical technology continues to advance, the healthcare field must persist with determination—almost like a quest for the Holy Grail—when facing rare and challenging diseases.

Ms. Yen-Yi Sung, Chairperson of Cheng Mei Materials, emphasized that the company, based in Tainan, hopes to contribute to the local community. She noted that societal discrimination against rare disease patients often stems from a lack of understanding, and she hopes the picture book will help more people gain accurate knowledge of Bubble Dragon. She added that the publication of the book is the result of many people’s efforts, and Cheng Mei Materials hopes it will inspire broader attention to the needs of rare disease patients.

Artist Ruo-Chun Hsu shared the creative journey behind the picture book, explaining that it has long been her wish to help more people understand and empathize with Bubble Dragon. Holding a fresh copy of the book in her hands, she was deeply moved. She also shared why the protagonist was named “Fei-Fei”: as a child, when her wounds were painful, her mother would gently comfort her by saying, “Blow it away, the pain will fly.” Hsu then guided attendees through the story, highlighting Fei-Fei’s emotions and hopes.

Dr. Ming-Che Tang (湯銘哲), Director of the NCKU International Wound Repair and Regeneration Center, explained that Bubble Dragon is an extremely rare skin disorder with highly complex care needs, and affected families face long-term medical and daily life challenges. The picture book aims to promote rare disease education in a gentle and accessible way, helping kindergartens, schools, and the wider public understand rare diseases while fostering empathy and respect. It will also serve as an important teaching resource for NCKU’s initiatives in life education, support for vulnerable populations, and interdisciplinary healthcare.

Cheng Mei Materials has long been committed to corporate social responsibility (CSR), especially in education promotion and support for disadvantaged groups. By collaborating with the NCKU USR team, the Bubble Dragon initiative can reach broader educational and public spaces, promoting a more inclusive and compassionate society. NCKU plans to continue leveraging academic expertise, USR experience, and corporate resources to deepen rare disease education and friendly campus initiatives.

The launch of Guess What Fei-Fei Has? was filled with warmth and engagement. The NCKU USR project team, From Clinic to Community: Life Care for the Bubble Dragon Population, expressed gratitude to the NCKU Center for Genetics and the Taiwan Bubble Dragon Association for their enthusiastic co-organization, marking the event a complete success.