New Podcast Series! (in Cantonese)

This programme is co-produced by the Hong Kong Mucopolysaccharidoses and Rare Diseases Mutual Support Group (HKMPS) and the Hong Kong Medical Genetics and Genomics Student Society (HKGeneSoc). The first series consists of 6 episodes, with updates every Friday starting on 16 February.

“Rare diseases” refer to diseases with an extremely low prevalence and a small number of patients. Those with rare diseases frequently go unnoticed by society due to the small number of affected people. Our programme aims to use this platform to connect with fellow rare disease friends, including patients and their families, and to listen to their life stories filled with challenges and miracles in the face of rare diseases. We also seek to learn more about rare diseases through discussions with experts and friends.

Click the link below to listen now!

Episode 1: The Voice of Pompe Disease (Cantonese only)

In this episode, our host, Terry Lai, Vice Chairman of HKMPS, invites two medical students from HKGeneSoc, Amy and Angus, to share their experiences of living with Pompe disease and their insights as members of HKMPS.

Episode 2: International Rare Disease Day (Cantonese only)

In this episode, we invited Mr Stephen Ma, a founding member of HKMPS who continues to serve on the executive committee, to speak with Terry Lai, the vice chairman of HKMPS, and two guest hosts, Chelsea and Angus, medical students from HKGeneSoc. They share interesting stories and personal experiences related to the International Rare Disease Day, which is held at the end of February each year.

Episode 3: MPS Type VI (Cantonese only)

In this episode, we are honoured to invite 15-year-old Chu Yat Long, a member of the HKMPS who suffers from MPS VI, and his father to share their journey in dealing with rare disease, as well as their touching stories of growth, speaking with programme host Terry and two medical student guest hosts, Sophie and Amy from HK GeneSoc.

Episode 4: Hong Kong’s Drug Policy (Cantonese only)

In this episode, we are delighted to welcome Dr Luk Che-chung, former Chief Executive of the Hospital Authority’s Kowloon East, Hong Kong West, and Hong Kong East Clusters. He talks to the show’s host, Mr Terry Lai, Vice Chairman of HKMPS, and Beatrice, a medical student guest host from HKGeneSoc, about current drug policies in Hong Kong, as well as future policy directions for drug registration and research. Dr Luk also discusses his memorable experiences while working for the Hospital Authority.

Episode 5: Duchenne Muscular Dystrophy (Cantonese only)

In this episode, we are honoured to interview 15-year-old Chan Tsz Kin, a member of HKMPS who has Duchenne Muscular Dystrophy, and his mother Michelle. They join host Terry and two guest co-hosts from HKGeneSoc, medical students Sophie and Chelsea, to discuss Tsz Kin and his mother’s emotional journey through this rare disease, as well as their moving story of growth.

Episode 6: Rare Diseases and Life (Cantonese only)

In the first half of this programme, Beatrice, a medical student guest host from the Hong Kong Genetics Society (HKGeneSoc), discusses the organisation’s founding, structure and vision. In the second half, Terry, the programme’s co-host and HKMPS vice chairman, shares his favourite films and television shows about rare diseases.

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