Latest Activities

Seeing motorcycle experts #TwoWheeledStuff and #LittleQie Ren Xianqi riding their Honda Monkey around Macau, and not forgetting to raise funds for children with rare diseases 🫶🏼 You can really feel the warmth even through the screen 🫂

The four-day Swire Properties Love Ambassador Charity Bazaar at Pacific Place, which has been running for 25 years, successfully concluded this past Sunday🥳

👉 What have our friends with rare diseases been up to lately? 👇 Busy showing off their talents! 😎 Showcasing beautiful paintings, making handicrafts, and there’s even stuff to buy! 🥳

They may have impaired vision 👓 or mobility issues 👩🏻‍🦼, but their willpower and abilities surpass many others 💪🏼. Congratulations to Yiu Sum-yuet, Yeung Ka-ying, and Lam Pok-yin on receiving the "HKPS Bright Future Scholarship 2026." This honor recognizes the indomitable spirit they have demonstrated in the face of physical limitations.

Lee Wing-man, who suffered from poliomyelitis in childhood, resulting in muscle atrophy and weakness that left him with only the ability to move his head and a few fingers, had seen his health deteriorate in recent years. A few months ago, he was hospitalized with pneumonia, but sadly succumbed to his illness and passed away.

They may have impaired vision 👓 or mobility issues 👩🏻‍🦼, but their willpower and abilities surpass many others 💪🏼. Congratulations to Yiu Sum-yuet, Yeung Ka-ying, and Lam Pok-yin on receiving the "HKPS Bright Future Scholarship 2026." This honor recognizes the indomitable spirit they have demonstrated in the face of physical limitations.

🌟 The whole table is overflowing with love! 😆 Lifewire rare disease families received so much warmth and surprise this Mid-Autumn Festival! Beyond exquisite mooncakes and fresh fruits 🍎🍊🍌, there were also heartwarming fortune rice and frozen wild cod 🐟. Every family left with big bags of cod, going home with full hearts and hands.

Dr. Ir. Alain Fong, Founder and Director of CareNet, along with a group of children with rare diseases, wishes everyone a Happy Mid-Autumn Festival. Families of children with rare diseases have been receiving festive gifts 🥮 filled with blessings from kind-hearted individuals 🥰. Pok-yin, who has Rubinstein-Taybi syndrome, has already finished assembling his cute rabbit lantern 🐰🏮.

Ian Tsou, a student nurse suffering from a rare brain cancer called "non-germinomatous germ cell tumor" (NGGCT), is currently receiving targeted therapy after Gamma Knife surgery reduced his brain tumor from 46cc to 3.6cc. However, during a follow-up visit late last month, he suddenly experienced breathing difficulties and an inability to expectorate phlegm, necessitating immediate admission to the ICU for intubation and mechanical ventilation. Doctors believe this may be a side effect of the targeted therapy; as the cancer cells in his spinal cord break down, the resulting edema and secretions are compressing his nerves, causing his respiratory distress.

Last Thursday, Pui-shan, who can only move two of her fingers, shared her life story with the CareER Association at Hilti, a provider of technology and services to the construction industry.

This past Sunday, the sun was shining brightly, and thanks to the Hong Kong Disneyland Resort Community Sharing Programme for donating tickets, over 15 families with rare diseases were able to enjoy a day at Disneyland.