The highly anticipated new season is here! 🎧
Co-produced by the Hong Kong Mucopolysaccharidoses & Rare Genetic Diseases Mutual Aid Group (HKMPS) 👥 and the Hong Kong Medical Genetics and Genomics Student Society (HKGeneSoc) 🧬, Season 3 brings you nine brand-new episodes, launching every Friday on YouTube and Spotify!
Episode 1: X-Linked Hypophosphatemia (XLH)
In this first episode, Terry Lai, HKMPS Vice Chairman, joins medical student guest host Beatrice and Ashley, President of the Hong Kong X-linked Hypophosphatemia Association, to explore the stories and challenges faced by those living with the rare disease XLH.
Did you know? There are approximately 7,000 rare diseases worldwide, yet many remain largely unknown or undiagnosed. This season takes you deeper into the experiences and hopes of our rare disease community 🌈
(Available on: YouTube and Spotify)
Episode 2 Introduction: “Undiagnosed Diseases“
In this episode, we explore an often-overlooked topic: undiagnosed diseases. Many patients suffer from long-term symptoms, but due to the rarity of their genetic conditions or symptoms, they are unable to receive a formal diagnosis. Beyond physical pain, this “undiagnosed” status also brings psychological stress and emotional burden to both patients and their families. 💭
We are honoured to have Dr Brian Chung, Chief Medical and Scientific Officer of the Hong Kong Genome Institute, along with members of HKGeneSoc, Herbert and Angus, to discuss how genomics and international collaboration can help solve medical mysteries. We’ll also highlight the upcoming International Symposium on Genomic Medicine, to be held on 17 November at Hong Kong Science Park, and share key highlights of the event 👂🎧 !
Curious about how Hong Kong is advancing genetic diagnosis? Or know someone facing similar challenges? This is an episode you won’t want to miss!
(Available on: YouTube and Spotify)
Episode 3 Introduction: “Amyotrophic Lateral Sclerosis (ALS) and Assistive Technologies”
In this episode, we are joined by Mr Raymond Leung, founder of the ALScare Christian Association, Prof. Edwin Chan, Director of the School of Life Sciences at The Chinese University of Hong Kong, and Mathias, a member of HKGeneSoc. Together, they explore the journey of ALS patients, the story behind the creation of support networks, and how Voice-Link helps preserve a person’s “voice” and “hope.”
Technology is more than just cold machinery—when it meets human stories, it becomes a powerful force that sustains warmth and dignity. Even as the body weakens, as long as the mind still has a voice, one is never truly forgotten by the world. 🎧
(Available on: YouTube and Spotify)
Episode 4 Introduction: “Exploring Genetic Counselling”
Have you ever heard of the profession of a “genetic counsellor”? 👩🔬
They are an essential part of the healthcare team, helping patients understand genetic test results, explaining potential risks, and offering emotional support to assist families in making informed medical decisions. 💬
In this episode, we are joined by Terry Lai, Vice Chairman of HKMPS, guest hosts Chelsea and Engho, along with Dr Annie Chu, Head of Operations (Medical and Scientific Branch) of the Hong Kong Genome Institute. Together, we delve into the vital role genetic counsellors play in Hong Kong’s healthcare system. 🧬
You’ll discover that genetic counselling is not just a profession—it’s a bridge connecting medicine with human compassion. If you’re curious about the future of genomic healthcare, this is an episode you won’t want to miss! ✨
(Available on: YouTube and Spotify)
Episode 5 Introduction: “Medical Students’ Campus Life”
Ever wondered who brings the stories of rare-disease patients and the expertise of genetic specialists to life? Throughout this series, medical students have always been indispensable partners beside patient groups and clinicians. Today, we hand the microphone to them. 🎙️
In this episode, Beatrice and Herbert chat about their medical journey at The Chinese University of Hong Kong and share how they juggle the demanding MBChB curriculum, personal life, and their responsibilities at HKGeneSoc. 📚
How do they manage it all? Tune in to meet the teammates behind the scenes and hear their most authentic stories. 🧑⚕️
(Available on: YouTube and Spotify)
Episode 6 Introduction: “Understanding National Rare-Disease Policies”
Behind every rare-disease diagnosis lies an arduous odyssey from clinic to clinic—and that journey is quietly shaped by policy. How do the healthcare rules differ across the Strait? What do those differences mean for patients and their families? 🤔
In this episode, HKMPS Vice-Chairman Terry Lai and guest hosts Angus and Lolo sit down with Prof. Dong Dong, a leading scholar in public health and bioethics at The Chinese University of Hong Kong. Together they unpack the intricate landscape of mainland China’s rare-disease policies—from the National Reimbursement Drug List to the diagnostic bottlenecks faced by grassroots hospitals. 💊
We confront the hard questions: why are some Hong Kong families now looking north for treatment? Within the Greater Bay Area blueprint, where are the breakthroughs—and the roadblocks? How can researchers, patient groups, and the public collaborate to build a more hopeful future? 🤝
This is more than a policy discussion; it is a conversation about the people whom those policies touch. Join us for a dialogue aimed at bridging divides. 🫂
(Available on: YouTube and Spotify)
Episode 7 Introduction: “Multiple Sclerosis”
Behind the medical term “Multiple Sclerosis” lies a chain of “invisible” challenges: fatigue that no amount of rest can ease, sudden brain fog, and limbs that refuse to obey. How does one adapt to a world built for able-bodied people when faced with an unpredictable, lifelong illness? 🤔
In this episode, HKMPS Vice-Chairman Terry Lai and guest host Herbert welcome Finny, a courageous person living with MS, together with So Mei-ying, Director of the Hong Kong Neuro-Muscular Disease Association (HKNMDA). They open up the day-to-day reality of life with MS—from the emotional moment of diagnosis, through the maze of complex treatments, to the weight of social stigma. 💪
We tackle key questions: why is MS called an “invisible disease”? What unique hurdles do patients face within Hong Kong’s healthcare system? And how can community support groups like HKNMDA become a vital lifeline? 🙌
This is more than a medical share-out; it’s a conversation about resilience, identity, and finding strength in one another’s stories. Tune in for a narrative that reshapes perceptions and amplifies the voices of those who live with MS.
(Available on: YouTube and Spotify)
Follow our channel now and join us in discovering the unknown and sharing strength 💪
* Special thanks to The Hong Kong Society for Rehabilitation Community Rehabilitation Network Jockey Club Wang Tau Hom Centre for providing venue and technical support.