Special Gathering For Niemann-Pick Disease Group

Established in 2006, the Niemann-Pick Disease Support Group is about to enter its 19th year. On Saturday, February 15th, the group held a special gathering to show its support for patients and their families. A total of 17 patients and family members joined the event.

The event featured a special presentation by Dr. Chen Hsin-Tsung, who has dedicated years to research on Niemann-Pick disease. He provided detailed explanations of the disease's symptoms, clinical trial progress, and research developments, and introduced the UK Niemann-Pick Disease Foundation (NPUK), offering fresh insights and knowledge from multiple perspectives. Other experts in attendance included Dr. Fan Pi-Chuan, Director of the Department of Pediatrics at National Taiwan University Hospital; Dr. Yang Xiang-Ke, Director of the Oral Health Care Center for Special Needs; Dr. Chen Hui-An from the Pediatric Department; Nurse Wang Fei-Di from the Emergency Medicine Department; and Ms. Yu Pei-Yu, Chairperson of Good Breath Enterprise Co., Ltd. Additionally, the most exciting part was the online participation of Sandra Cowie, Director of the International Niemann-Pick Disease Alliance (INPDA), who provided valuable insights and recommendations.

As medical research continues to advance rapidly, the ongoing progress made by experts in both research and clinical practice is encouraging. At the event, family members shared their care experiences and offered mutual support, hoping that this gathering would provide strength for everyone to continue moving forward bravely.

Translator: David Lee (Becker Muscular Dystrophy)