Registration Link: Click Here

MEHU x MedLib

           … A living library to inspire compassionate care…

Title: Rare Diseases, Remarkable Stories

Date:     20 Jan 2026 (Tuesday)
Time:    12:30-2:00 pm HKT
Venue:  Lecture Theatre 2, 1/F, HKUMed Academic Building, 3 Sassoon Road, Pokfulam

Registration Link: Click Here

Abstract:
Rare diseases collectively affect approximately 1 in 67 individuals in Hong Kong. Local patients who suffer from them, and their carers, suffer greatly in terms of quality of life. We welcome you to join this unique sharing session where we will have the privilege of hearing directly from people living with rare diseases and the doctors who care for them. They will bring to life their stories of challenges overcome and yet to come, and the human experience behind clinical practice. We hope this conversation will deepen understanding of patient-centred care, bring empathy and curiosity to healthcare practice and raise awareness on what we can do to help.

Speakers:
Ms Chow Pui Shan (Josy)
Patient with Spinal Muscular Atrophy (SMA) who wrote a proposal with two fingers to Mrs Carrie Lam to get Spinraza for use in Hong Kong

Ms Rebecca Yuen
Mother of a girl with tuberous sclerosis who went to LegCo and the Hospital Authority to fight for mTOR inhibitor be included on the HA drug list, and Chairperson, the Tuberous Sclerosis Complex Association of Hong Kong (TSCAHK)

Dr William Chu
HKUMed graduate who attended Prof Chung’s Medical Humanities lecture on rare diseases years ago and was inspired to become a volunteer to serve rare diseases patients – now he is a Paediatric Resident at the Hong Kong Children’s Hospital.

Prof Brian Chung
Clinical geneticist and academic paediatrician in the Department of Paediatrics and Adolescent Medicine who takes care of patients and families with rare diseases and who has made significant research breakthroughs through the application of multi-omics analysis to uncover hidden genetic factors contributing to rare diseases and improve clinical outcomes for patients.

Moderator:
Prof Julie Chen
Director
Medical Ethics & Humanities Unit
School of Clinical Medicine, HKUMed

Welcome to join us!

Enquiry: Please contact Mr Edison Cheng (mehu@hku.hk).