NCKU and three companies sign MOU for sustainable Epidermolysis Bullosa patient care.-國立成功大學永續發展SDGs

NCKU and three companies sign MOU for sustainable Epidermolysis Bullosa patient care.

SDG10

NCKU and three companies sign MOU for sustainable Epidermolysis Bullosa patient care.

Synergy Correlation

 
The National Cheng Kung University (NCKU) International Wound Repair and Regeneration Center hosted the "Health Equality, Sustainable Love: The Never-Ending Journey of Whole-person Care—Book Launch of 'Let the Dreams of Epidermolysis Bullosa Patients Take Flight' and Signing Ceremony for Integrated Care MOU" at the Taipei City Mayor's Residence Art Salon on July 15th. This event not only presented the collective achievements of five years of care for rare disease patients with Epidermolysis Bullosa (EB) but also announced the next phase of sustainable care for EB patients in collaboration with three youthful enterprises: LaVidaTecCo., AgooodLife, and MentalWe. The initiative aims to combine telemedicine, art creation for commercialization, and mental health care to provide more comprehensive and holistic support for EB patients.

Bubble Dragon, short for Hereditary Epidermolysis Bullosa, is a rare genetic disease that renders patients' skin and mucous membranes unusually fragile, prone to breaking or forming blisters upon minor friction. In Taiwan, they are affectionately referred to as "Bubble Dragons," while internationally, they are called "Butterfly Children" due to their skin resembling fragile butterfly wings.

Apart from the agonizing two to three hours spent changing bandages daily, some endure finger and joint contractures due to prolonged wound formation, can only consume soft foods, or have to keep their eyes shut for two weeks when their eyes blister. Speaking too much might result in coughing up blood bubbles from their throats, not to mention enduring the stares of others in school or society. Living with this "lifelong from birth" disease, patients and their families are constantly in pain and distress.

Professor Ming-Jer Tang, former president of Tunghai University and recipient of the 2022 Ministry of Education Award for Teaching Excellence, currently the director of the International Wound Repair and Regeneration Center at NCKU, recalled that although the center was initially a pure academic unit of a national university, he decided to step out of the ivory tower of medical research after meeting Bubble Dragon patients at the Mayor's Residence event in 2018. He, along with his colleagues, resolved to care for these "most difficult wounds" and enlisted the help of Dr. Yi-Chun Lee, a psychology Ph.D. and former campus pastor at Tunghai University, to plan and organize.

While the world is striving to cure Bubble Dragons, Yi-Chun Lee decided to initiate the "Care beyond Cure" spirit by organizing a charity concert titled "Love and Scars" and inviting tennis star Su-Wei Hsieh to shoot promotional videos. This initiative led to the establishment of the "Bubble Dragon and Rare Skin Disease Specialty Clinic" at NCKU Hospital, where patients can consult all experts in one visit. They also organize autobiographical drama camps for patients annually, using drama therapy to heal their souls, and hold collaborative art exhibitions for patients and their families, showcasing the vibrant life energy bursting from their pain. Through the team's efforts, the ideal of holistic care is being realized. In May 2023, the center consolidated its past achievements into the book "Let Bubble Dragon's Dream Soar: The Whole-person Medical Practice of the International Wound Repair and Regeneration Center at NCKU," sparking a humanistic revolution in academia.

Ming-Jer Tang expressed that "Let Bubble Dragon's Dream Soar" testifies to how a national university academic unit can shoulder social responsibility, truly grounding academia and responding to the needs of special groups. This book signifies a new turning point. Today, returning to the place where he first met Bubble Dragons five years ago, collaborating with LaVidaTecCo., AgooodLife, and MentalWe—three professional, energetic, and compassionate companies—he aims to tell the public that the holistic care for Bubble Dragons by the NCKU Wound Repair and Regeneration Center will only become richer and more complete. Besides bringing a bright future to Bubble Dragons, he hopes to set an example in academia, showing how a national university and medical center with abundant resources should shoulder social responsibility and humanitarian practices.

Ren-Hao Pan, founder of LaVidaTecCo., stated that the company's establishment of the "WaCare Telehealth Care Platform" aims to eliminate health inequality through digital means. It has been implemented in over 600 remote communities across Taiwan, assisting over 60,000 elderly and home caregivers. The platform involves over 1600 medical experts who collectively safeguard vulnerable groups such as rural elders, dementia patients, and autistic individuals, generating 400,000 online care learning service uses during the pandemic. Bubble Dragon families will also access the latest and most accurate care knowledge through the WaCare platform, communicating seamlessly with physicians, care managers, and other patients, and even remotely consulting professionals via video for families unable to visit NCKU hospital for treatment.

Wen-Hung Yeh, CEO of AgooodLife, mentioned that AgooodLife has long conducted art co-creation activities for disadvantaged groups. Designers transform artwork into products such as packaging boxes, mugs, and backpacks, recommending them for corporate procurement. A portion of the profits is then returned to the groups, achieving mutual benefit and coexistence. Bubble Dragons harbor tremendous creative energy in their lives, not only gaining a sense of achievement and economic support through redesigned products but also fostering public understanding of this group through the layout of public spaces, creating a Bubble Dragon-friendly society.

MentalWe is the only digital platform in Taiwan dedicated to "psychological and mental health." It gathers multiple experts including psychiatrists and psychologists to provide comprehensive mental health services to the public. Its medical consultant, Professor Chen Jin-Hong, a psychiatrist at Chiayi Chang Gung Memorial Hospital and chairman of the Heartbeat Family Association, believes that Bubble Dragons are intimately acquainted with wounds from an early age, often unable to separate from their primary families, placing enormous invisible pressure on caregivers. This accumulation of negative emotions often affects the entire family. MentalWe's certified online stress relief courses and digital monitoring systems have effectively assisted many families. In the future, it will use remote methods to provide professional psychological support to more patients and their families.

Finally, Guo-Ming Wu, chairman of the Taiwan Bubble Dragon Patient Association, stated that association members were initially caring for their children on their own, unsure of what was right or wrong. With the help of NCKU, everyone's worries were finally alleviated, knowing how to dress wounds, what food is good for their children, and what is not. The Bubble Dragon and Rare Skin Disease team at NCKU has accomplished many things that were unimaginable before, leaving an indelible mark on the association's heart. Seeing NCKU connect with more corporate resources to help these children, the association not only feels deeply grateful but also gains more courage to move forward.

This event signifies the rise of the International Wound Repair and Regeneration Center at NCKU. Ming-Jer Tang expressed his gratitude by presenting "Let Bubble Dragon's Dream Soar" to the three companies and signing a memorandum of cooperation to deepen mutual exchanges and opportunities for collaboration. They pledged to work together to enhance the holistic care services for Bubble Dragons and create a brighter future for them.

The book "Let the Dreams of Epidermolysis Bullosa Patients Take Flight" compiles the achievements of caring for patients with the rare EB disease over the past five years.

EB patients endure a lot of strange looks and discrimination in school and society.

The next stage of care for EB patients will integrate telemedicine, commercialized art therapy, and mental health care, providing more comprehensive and holistic support.

The NCKU team and entrepreneurs will join hands to provide holistic care services for EB patients.

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國立成功大學SDGs離岸團隊擁有全球風能維護團隊5年的全球風控中心,並擁有5年的第一套商業套化輪播式光達設備;除建立捲簾式的移動監控技術,與ECN展示現歐洲海事外展能力。建築複合功能設計團隊與建築外置經驗塔在介紹節能建築的同時,驗證建站技術也在技術中心及平台上進行技術測試,分享階段平台成果試驗成果未來生結合應用的架構,以作為開發系統的架構。