It takes a village to raise a child. This is especially true for children with serious uncommon diseases. In HKCH, there are now designated nurses under endocrinology and neurology to take care of these patients. They serve as a bridge between families and different hospitals / multidisciplinary teams to coordinate the patients' investigations, treatments, rehab training and disease monitoring, so they can receive accessible, holistic, personalized medical care and community support.

Eight-year-old Chuen Yan has fibrodysplasia ossificans progressiva, nicknamed "stone man syndrome", a rare condition caused by gene mutation. Patients' muscles, tendons and ligaments may grow into new bones after an injury, causing skeletal malformation and loss of mobility over time. Other bodily functions may be affected as well.

Candy Chan is the designated nurse and first contact point for Chuen Yan. Her mother, Mrs Siu said, "Chuen Yan had a persistent fever recently, so I called Candy for advice. She taught me how to deal with it and arranged an early follow-up with the doctor. I am so grateful to have her guide me through all these."

Communicating with schools is also part of Candy's job. "We held a talk to explain Chuen Yan's situation to her teachers, such as injury prevention and emergency handling, so she could have a safe environment and appropriate care."

Chuen Yan said, "My PE teacher is especially caring. He always makes sure if I can join certain sports." Mrs Siu shared, "One time, Chuen Yan was knocked down by a classmate. The teacher reacted quickly and helped cleanse her wound. I rushed to the school and gave her steroid prescribed by the doctor to suppress the inflammation. Luckily, the injured area did not become bone afterwards."

The designated nurse programme also aims to support patients' changing needs at different life phases, enhance their quality of life, empower them for lifelong self-care, and facilitate a smooth integration into the community.