With the support of the “Dreaming Through Chung Chi Scheme”, Casper Wong (Biology / 2) and Thomas Sze (Government and Public Administration / 2) organised their programme “Empowerment through Learning” during this past summer, linking patients with rare diseases and underprivileged children through cooperate with Rare Disease Hong Kong (RDHK), District Council member and local organisation. In this initiative, rare diseases patients can regain their confidence by serving as online tutors, while the children can receive learning support and understand the needs of other communities, realising the meaning of inclusion.

［C: Casper Wong (Left) | T: Thomas Sze (Right)］

Q: Why did you focus on rare disease patients?

C: In last December, I participated in an event organised by the University YMCA of Hong Kong, which focused on realising patients with rare diseases. During the event, I chatted with some rare disease patients and learned that they do not just want to be passively helped, they also want to volunteer and help others, but their illnesses make it difficult to do so. As some of these patients are highly educated, which inspired me to create a platform to help them utilise their strengths while also raising awareness about this community.

T: I have people close to me who suffer from rare diseases, so I have always wanted to learn more about this group. I met Casper in a first-year STOT class, and during a casual dinner, he shared his idea of helping rare disease patients. This led us to collaborate and develop an online tutoring program.

Casper (1st right) indicated that the most significant outcome was how interpersonal barriers broke down. This genuine closeness is his and Thomas’s (1st left) most treasured reward.

Q: Why did you design the programme as online tutoring?

C: Some rare disease patients possess valuable knowledge but lack opportunities to apply it. The most direct way to leverage this knowledge is most likely education, thus we focus on tutoring. As for adopting an online model, the main consideration is that patients with rare diseases are often not suited for frequent travel. Among the tutors we recruited through RDHK, one cannot be exposed to sunlight, one can only speak slowly, and one using a wheelchair. Online tutoring eliminates the hassle of travel, saves energy, and allows tutors to respond to students’ questions when they are in better condition.

T: Additionally, we were concerned about the misconceptions that some people still hold about rare diseases. Face-to-face interactions might subject tutors to unnecessary pressure. By using messaging apps like WhatsApp for voice, text, and image exchanges, tutors can communicate and provide guidance more openly, so students can gradually develop a better understanding of the rare disease community.

The programme addressed the needs of underprivileged students as well. Working with Mr. Lam Wing Cheung, a member of Eastern District Council, and a local organisation Parents with Child Association, we recruited a group of primary school students from the Eastern District to provide them with free summer homework assistance and supplementary exercises, alleviating their problem of limited access to learning resources.

Through collaboration with RDHK, District Council member Mr. Lam Wing Cheung, and Parents with Child Association, the programme engaged rare diseases patients as online tutors, providing underprivileged students from the Eastern District with learning support.

Q: Besides tutoring programme, were there other activities held, and what were their purposes?

C: In addition to tutoring, we organised on-site activities before commencement and at the end of the programme. In July, we held an ice-breaking event where, besides RDHK introducing their work and mentors sharing their personal experiences, participating students could use specialised tools to simulate the physical sensations and daily challenges faced by individuals with total color blindness and stiff person syndrome. We hoped students would learn the value of resilience from patients while also cultivating empathy.

T: The August activity was a Fun Day which allowed mentors and students to gather and enjoy themselves after the tutoring programme. We arranged two minigames— Newspaper Tower and Railway Restoration — to foster teamwork and strengthen the bond between students and mentors through group activities. A sharing session was also included. We found that the atmosphere at the closing day was livelier than at the ice-breaking event, and students were more willing to befriend the mentors with rare diseases.

Q: What experiences, insights or reflections has the programme brought you?

T: The programme has given me a more nuanced understanding of the challenges confronting the rare disease community. For example, an alliance may be serving over 1,000 members with more than 300 distinct diseases, with an average of only two or three patients per disease, so their needs and medications can vary considerably. This shows immense difficulty in advocating for government resources.

The programme was invaluable in training our organisational and problem-solving skills. Every step was a learning opportunity, from persuading partners to navigating recruitment hurdles. Furthermore, the programme yielded unexpected results. This collaboration fostered connections between the district councillor and RDHK, leading to outreach activities that strengthened inter-organisational ties, which we believe will provide more support for rare disease patients.

C: The most significant outcome was how barriers between two groups broke down. During the initial ice-breaking event, students and tutors were noticeably distanced and they had limited interactions. At the Fun Day, however, we saw students chatting and playing games with tutors, while parents shared conversations with tutors. This genuine closeness is our most treasured reward.

Some tutors shared that they rarely had chance to interact with primary school students, and this experience made them feel incredibly happy, whilst proving their capability to overcome challenges, building their confidence for the future. Thomas and I intend to continue volunteering with RDHK, hoping to strategise how to better support the diverse circumstances that rare disease patients face, and ensure our knowledge extends beyond the scope of this project.

Student Reporters Lee Yin Lok