Mr. K.P. Tsang
Chairman of Rare Disease Hong Kong
During the first few years of growth of Rare Disease Hong Kong (RDHK), students from the two medical faculties have been our inseparable fellow partners.
There are new students joining our team batch after batch.
Amid the hectic study schedule, they squeeze in some time to make friends with the rare disease patients.
Not only do they try to understand the medical needs of the rare disease patients, but they also strive to know the patients as a person who has other human needs.
Every year they report their work progress and brilliant achievements to us, unknowingly becoming the ambassadors building bridges between the future doctors and patients.
Fellow students, having you by my side makes me feel grateful and inspired.
Shoulder to shoulder, let’s keep going on our journey together!
Rare diseases are the concern of scientists, of doctors, of caregivers, of patients... Nonetheless, rare diseases are also the concern of all of us, for it is a matter that touches upon every one of our lives.
To most people, rare diseases might seem like a distant and abstract concept, irrelevant to them and their families. However, do you know that among every 67 Hong Kongers, one of them is diagnosed with a rare disease? Once you start understanding the causes of rare diseases and the variety of syndromes and illnesses that fall under this umbrella, you will then realize rare diseases are never far from your life.
We are grateful to have a group of medical students who, under their own initiative, compiled a book consisting of the life stories of over a dozen rare disease patients, bringing to light the different issues faced by rare disease patients in Hong Kong.
I hope that through reading this book, you will have a more thorough and vivid understanding of rare diseases and the lives of the patients, caregivers, warriors, and leaders that they affect.
Prof. Edwin Chan
School of Life Sciences,
Chinese University of Hong Kong