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.
The International Pompe Day 🌏 is celebrated every year on 15 April to raise awareness of the Pompe disease.
For five weeks starting on 1 April, we will be sharing stories about the disease and the struggles of those living with it.
This year, let’s show some love for people with Pompe disease ❤️ and give them some strength! 💪🏻
With the advancement of testing technology, not only can we assess the risk of specific rare diseases in babies through prenatal carrier screening, we can also consider screening newborn babies (usually within the first week of birth) to detect whether th ...
(Original Article)Professor Ho Yin Edwin Chan from the School of Life Sciences of The Chinese University of Hong Kong (CUHK), in collaboration with scientists from the University of Illinois at Urbana-Champaign, USA and the University o ...
Our children’s magazine, Little Bean, is out!
With his mother bedridden by Huntington’s Disease, Ken has been her primary caregiver for 16 years. Adding to this challenge is a 50% chance of Ken carrying the same genetic disease himself. Both of Ken’s sisters have gone through tests and confirmed that they do not have the disease. But why would Ken rather not know?
Lifewire Run 2019 invited three young patients to put dream stories to videos. From developing the concepts, story boards to filming and production, these little directors went all in. Their videos even starred artiste Leanne Li, the ambassador of Lifewire Run 2019.
Friends: Last year, we partnered with the Hong Kong Professional Photographers Network (HKPPN) and staged a "Rare Portraits" Photo Exhibition at the Central Market. This year, we are staging the "Rare Image" exhibition. Exhibition Period: 25 July to 15 ...
For Rare Disease Day 2018, we will host a documentary screening and sharing session at the Science Park. We will show the micro-films that students of the Chinese University and Shue Yan University made for us and the footage of last year's "Rare Portrait ...
