Second Hong Kong Epidermolysis Bullosa meeting 20 May 2024
The second Hong Kong Epidermolysis Bullosa conference was held from February 27th-28th, 2023 at the Hyatt Regency in Shatin, Hong Kong. During the conference, medical professionals and scientists from New Zealand, Singapore, Hong Kong, Taiwan, Mainland China, Australia and the Philippines gave presentations on the physical and mental impacts of EB and the best practices for caring for EB patients. The president of Debra International Ritu Jian, and other Debra International officials were present. In addition, participants from Rare Disease Hong Kong (RDHK), including Mr. KP Tsang, and his team were also present at the meeting.

​The first day of the meeting was dedicated to local EB patients, caregivers, and interested nurses from the Hong Kong Hospital Authority. In the morning, presentations were given by Lea Prujean and Sharon Cassidy from Debra New Zealand. Ms. Cassidy shared her deep knowledge on EB occupational and physio-therapy, EB nutrition and dental issues, and EB wound care. In addition, she discussed the latest clinical treatments available for patients including gene therapies. Meanwhile, Ms. Prujean discussed the psychological, financial and social impacts of EB on families, drawing from her many years experience helping EB families. After lunch, there was talk by the company Mölnlycke on new EB products such as bandages. A discussion was also held on how to improve EB care in Hong Kong. ​

The second day of the meeting was directed towards healthcare professionals. Attendees were introduced to new medical technologies and healthcare approaches to EB patients from around the world. In the morning, speakers from Taiwan shared their holistic care approach to EB patients and new dressing technologies were introduced to healthcare professionals. In the afternoon, the professionals discussed how to share Chinese language EB care resources in China and Hong Kong, and further discussed methods of skin infections and genetic diagnosis.

​The conference was made public to all EB patients and their families in the Asia Pacific region, and over 70 people joined the presentations on zoom. We at Debra HK are truly grateful for all medical professionals and caregivers who gave presentations and shared their amazing knowledge of EB.

1. Ritu Jain, President of Debra International

2. Ritu Jain with Tobias Suan, Debra Hong Kong volunteer

3. Sharon Cassidy of Debra New Zealand

4. Lea Prujean of Debra New Zealand

5. KP Tsang of Rare Disease Hong Kong
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