Review Interviews

Community Parters

TSCAHK Chairperson

Ms. Rebecca YUEN

HKSR social worker

& Project Manager

Ms. Gigi YEUNG

Q. Through various activities of different scales—such as the “TSC, We Shall SeeSee the Rare” exhibition, expert seminars, and collaborations with different universities—do you think this rare disease has gained more public attention and awareness?

A. Yes. My daughter is 28 years old. Twenty-eight years ago, no one would have ever mentioned the term “rare disease”, nor would they have thought that rare diseases could be so close to us. A study by the University of Hong Kong found that one in every 67 people in Hong Kong has a rare disease. There are over 7,000 to 8,000 types of rare diseases worldwide. In fact, several hundred thousand people in Hong Kong are living with rare diseases. Over 20 years ago, no one really thought about what a rare disease was—medical care was not advanced, and resources were insufficient. However, over the past decade, we have done a great deal of advocacy work and public education. As medical care in society has improved, the concept of rare diseases has gradually entered people's daily lives.

Q. Having read the previous two issues of TransFeed, we know that you founded the Tuberous Sclerosis Complex Association of Hong Kong in 2015 and celebrated its 10th anniversary in October of last year. Along the way, have there been any events or moments that left a deep impression on you? Could you give one or two examples?

A. Securing access to medication is one of the most memorable experiences for me. I accompanied the mother of a patient to the Legislative Council, where she tearfully described the situation of “having the medication but no money to pay for it”. Subsequently, we advocated for the inclusion of rare disease drugs on the drug formulary so that the government could provide subsidies to patients. At the time, the news was widespread and deeply moved me. I had a very close relationship with that mother. Shortly after the Legislative Council incident, her child passed away. It was that sense of frustration—that refusal to accept the outcome—that drove me to see this through. . At this moment, I am grateful that I did not give up back then, and I deeply appreciate the trust that other mothers placed in me as we walked this path together. Within four and a half years, our medication went from registration to being included in the safety net and further promoted to the status of a designated drug.

Q. What has kept you going all this time? We know that your daughter is a major reason you have never given up. Are there any other factors that motivate you to continue leading the association through the next decade?

A. Of course, my daughter is my greatest driving force. I have also received a great deal of support from many doctors, such as Professor Chen Zhifeng. Sometimes, when I attend seminars in the Chinese mainland or overseas, I learn about what others are doing or come across new information. I then share these insights with the professor, and at the same time, all kinds of bold ideas come to mind. He has always supported and encouraged me, helping me put them into practice. In addition, there are many other doctors who are willing to “go all out” with me. In 2018, we launched the “Seed Project”, through which we sponsor medical students each year to attend international conferences abroad. This allows them to become familiar with tuberous sclerosis complex while still students, passing down knowledge from generation to generation. Beyond the professional realm, we also engage the public, pursuing a multi-pronged approach to build a large safety net. This gives me a sense of reassurance and enables me to continue moving forward.

At the beginning of the interview, Rebecca had already articulated her connection with the Translation Studio. “Do you remember coming over to provide interpretation services at our tenth-anniversary dinner?” she asked. “I also introduced you to the Rare Disease Alliance, and you provided real-time interpretation services at the WRDD seminar.” Rebecca described her relationship with us as intricately intertwined. She also mentioned how Dr. Pan Jun facilitated the collaboration between the two organizations. Furthermore, she noted that the partnership between rare disease advocacy and translation is not merely about negotiating work tasks, nor is it based on any inherent link between the two industries. Rather, collaboration emerges when all parties share the same vision—to advance society and foster greater empathy. She also expressed her hope that more young people would become aware of rare diseases and understand the difficulties faced by patients.

Q. From a community partner's perspective, do you believe service learning in universities can help raise awareness of this rare disease through higher education? What is the greatest benefit that collaborating with us brings to you? Conversely, what kinds of growth or skills does this collaboration offer our students?

A. I really hope that the young generation, no matter what major they are, will have the opportunity to get to know us. I think communicating with people suffering from rare diseases can help students understand “happiness is not inevitable”. Rebecca shared a true story to illustrate the preciousness of “choice”. “Yiu Yiu, my daughter, had no choices in her life, and her cousin, who was born from a broken family, also felt lost.” She recalled how to enlighten Yiu Yiu’s stressed-out cousin. “Do you know how fortunate you are to be able to choose what subjects to study, clothes to wear, or lunch to enjoy? You have freedom to make decisions, and you should cherish it.”

This is the core message she wants to send to students after collaborating with the university. The significance of this partnership extends far beyond simply popularising knowledge about rare diseases; it is a profound life education—allowing students to reflect on themselves through service, cherish what they have and comprehend the relationship between the individual and society. “Besides understanding the difficulties faced by patients and being more inclusive, I still want everyone to value themselves.” This mutual growth is the most valuable fruit of the collaborative relationship.

Q. Based on your previous collaborations, what do you consider to be the most worthwhile contribution and support of the Translation Studio that should be carried forward?

A. I believe the most worthwhile element to continue is having different stakeholders come together on the same platform, allowing each party to exercise influence in their respective roles—rather than simply leaving people with the impression that “you are very impressive”. For example, on the day of the tenth anniversary, there may have been only five or six patients and doctors from the mainland. However, because of your participation and your help with interpretation, many people were still able to see and feel the value of multiple parties coming together and jointly driving things forward. I also truly believe this is a win-win collaboration. It does not rely on the effort of a single individual; every success requires the collective contribution of many people.

Q.How did you know about the Translation Workshop of HKBU? Why did you choose to work with us?

A. I found out about the Workshop through the service-learning platform, and I also met Janice here. We have talked about our backgrounds, respective fields of work, missions, and potential areas for future collaboration. Since my work mostly involves supporting rare disease patients and those related organisations, we connected and exchanged ideas in depth based on this aspect. Janice also pays attention to social current affairs. She believes that rare diseases have been overlooked by society. Given that, we started exploring the relationship between translation, patient support organisations, and rare diseases—hoping to get more attention from the public.

At the same time, we discussed what kinds of activities we could finish together. One of our collaboration projects is translating disease information. Many rare disease resources are often available in English or other languages, and there is a lack of content in Chinese. Through this process, we are also raising awareness of rare diseases so that more people can learn about them.

Q.Having gone through the translation project of the fourth issue, “The Final Report on Self-help Organisations in Hong Kong: An Exploration of Model Development and Best Practices”, and the sharing of social work experiences with our Workshop members in the sixth issue, how do you feel about our past collaboration? Could you share any enjoyable moments with us?

A. I think the Workshop teams are very dedicated and team-orientated and walk the walk; besides, the collaboration process was smooth. Furthermore, I believe that every encounter is a gift. Even though the time spent with Janice and all of you was short, and we may not remember each other afterwards, we have all left some footprints in each other’s lives.

Talking about the impressive part for me was definitely the Tuberous Sclerosis exhibition; it truly exceeded my expectations. I didn’t expect a student team to achieve such a level. Moreover, I think it’s invaluable for a patient organisation having the opportunity to hold a large-scale exhibition at a university successfully. In addition, there was also another event we have planned together, such as designing leaflets to reorganise the pathology knowledge. This was a warm message to tell patients they are not alone, and there still are people in Hong Kong who care about their feelings and are concerned about their well-being.

Q. What are your thoughts on service learning in universities? Is it an opportunity for students to get to know their community? Is it skill training or something else?

A. Service learning allows students to have direct, hands-on engagement with the rare disease community, like, “What kind of situation do these patients face?” and “What do their families go through?” I think it’s a great opportunity, like opening a window, allowing everyone to gradually understand and enter into the lives of others through this shared experience.

Sometimes I think that even if we patients come to the university for an hour sharing session, there’s still a sense of distance. But I feel that having this time together, working, solving problems, and getting to know each other in the process are invaluable memories. Personally, I think it will make everyone more humble in their interactions with others when they work in the future. It also helps them realise that the world is vast and that life and everyone’s experiences are impermanent; we should cherish what we have now.

Q. Is there any training for non-social work major students to help them handle different situations?

A.I don’t have a formal definition of “trainin,”, but before collaborating, I will hold a briefing session to familiarise students about our services, organisation background, and reasons why we want to have this collaboration; moreover, I will provide an introduction of the groups we serve so that students have a basic understanding and impression.

Q.What are your expectations for continued cooperation? For example, are there specific areas where we can provide additional support?

A.Sometimes I’m not fully aware of the specific projects the workshop is involved in.. My current understanding of translation is mainly the conversion of English into Chinese (or other languages). But I realise your workshop offers much more potential. I think gaining a more comprehensive understanding would help broaden collaboration opportunities.

HKBU Centre for Innovative Service-Learning

We are delighted to welcome Ms. Cindy Chan, founding director of the Innovation Service Centre, to speak to us today. We are very grateful to her for taking time out of her busy schedule to join us, and we would also like to thank her for her contributions and support to the Translation Workshop.

CISL Former Director

Ms. Cindy CHAN

Dr. HO used to work at the Hong Kong Baptist University (HKBU) Centre for Innovative Service-Learning and was very helpful when the Translation Workshop was initially set up. We are pleased to have invited him to this conversation and are grateful to him for his sharing and support.

CISL

Former Senior SL Consultant

Dr. Jason HO

We are honoured to have invited Dr. Lam, who previously worked at the Centre for Innovation and Service Learning (CISL), for an interview. Dr. Lam has provided great support to the Translation Workshop. We thank her for her support and for sharing her memories of CISL.

CISL Former Director

Dr. Lisa LAM

Q. Reviewing your collaboration with the Translation Workshop, what moments stand out in your memory?

A. Hong Kong Baptist University has never been short of passionate teachers like Professor Pan. I recall that the Centre organised an information session on service-learning, during which Professor Pan asked questions with great enthusiasm; her passion convinced me that she was deeply interested in this model. After the session, I took the initiative to speak with her at length to explore the possibilities for collaboration. At the time, Professor Pan was keen to secure more practical resources for her students, such as an ideal training space for interpreting, translation and simultaneous interpreting. We hit it off immediately and began to sketch out various plans for collaboration: wouldn’t it be the most direct practical opportunity if students from the Department of Translation could serve as on-site interpreters when visiting NGO partners came to the university? This initial idea sowed the seeds for our future collaboration.

Q. What is at the heart of service-learning? How does it benefit both students and the community?

A: Our aim is to ensure that every student has the opportunity to participate in service-learning. The core value of this model lies in the fact that it not only enables students to acquire practical skills outside the classroom, but also ignites a passion for teaching – when teachers witness their students’ growth first-hand, they naturally become more committed to their teaching. At the same time, the community receives tangible assistance from the students’ professional services, creating a virtuous cycle that benefits all three parties.

Q: How can we ensure that service-learning projects ‘begin with good intentions and yield positive outcomes’, whilst avoiding any negative consequences arising from a lack of understanding?

A: The key lies in thorough pre-service training. Through such training, we ensure that students possess the necessary professional skills and empathy before they begin their service. This is not only to ensure the quality of the service provided, but also to show respect for those we serve and to prevent well-meaning actions but bad outcomes due to a lack of understanding.

Q. In the early stages of the project, how did you go about finding suitable community partners and establishing long-term collaborative relationships?

A. Initially, we mainly sought partners from within our own existing networks, as this ensured there was sufficient mutual tolerance and understanding between both parties during the early stages of the collaboration. We tended to choose partners who were patient and good communicators, to ensure we could work well together and grow together. As our reputation gradually grew, finding partners became much smoother. I recall the Traditional Chinese Medicine(TCM) feature in the third issue of TransFeed as a prime example. The TCM practitioner featured was someone I regularly consulted; I introduced him to the studio. He was more than happy to come and share his expertise, which not only gave our students a deeper understanding of TCM culture but also led to a wonderful collaboration on a column.

Q. Do both parties need to sign a formal contract during the collaboration?

A: We do not have a formal contract in the legal sense, but we have established a clear set of guidelines, including the Community Partnership Handbook, the Teacher Handbook and the Student Handbook. These handbooks clearly define the roles and responsibilities of all parties. Furthermore, for projects involving sensitive information, we will sign a confidentiality agreement; for example, requiring students not to disclose the privacy of service users.

Q: How can we ensure that the outcomes of service-learning continue to have a lasting impact?

A: To be honest, this is a major challenge we face. At present, we still lack a systematic mechanism for organising and sharing resources. Looking ahead, we need to establish a more comprehensive knowledge base or platform to properly preserve and disseminate the outcomes of past projects—such as teaching materials, translated works and event records—so that their value can be sustained.

Q. Do you think Artificial Intelligence (AI) will replace human work?

A. I don’t believe AI will completely replace humans, particularly in fields that require a “human touch.” In the service industry, for example, people will always prefer to interact with real people rather than cold machines. AI can be a powerful tool, but the passion, creativity and emotional connections between people that are unique to humans cannot be replaced. Take hiring a translator as an example. I look at far more than just the translated text. I want to understand the translator themselves, and the motivations and thought processes behind their words – why did they choose to interpret it in this way? How much passion have they invested in this project? This collaborative rapport, the sense of trust built on deep understanding, and the ability to capture the “warmth” of the text are things that AI currently cannot provide.

Q. How do service-learning activities differ across different disciplines?

A: The appeal of service-learning is because of its ability to integrate closely with specialist knowledge from various disciplines. For example, students from the Department of Chemistry can apply their specialist knowledge to conduct food safety analyses; students from other science disciplines may design public outreach activities focused on specific scientific fields. This approach ensures that service is not merely an act of giving, but also a profound practical application of academic knowledge. In the Department of Translation, for instance, translation workshops provide translation services to individuals or organisations in the community who require them.

Q: How does service-learning help students discover their self-worth?

A: Service-learning is a process that enables students to ‘see themselves’. When they use what they have learnt to help others, they gain a genuine sense of their own capabilities and worth. Particularly during the pandemic, many students filled the void in their lives through voluntary work, not only did they discover their future career paths, but they also established a life goal of giving back to society.

Q. The Centre has previously published commemorative publications. Could you share the design philosophy behind them?

A: We once published a retrospective special edition, and the team put a great deal of thought into the design. For example, the cover features a rectangular sleeve design, when you pull out the inner pages, you see an image of two hands clasped tightly together, symbolising ‘cooperation’ and ‘connection’. The thickness of the pages was also carefully arranged in a staggered pattern, with the aim of creating a unique reading experience. Just as with the TransFeed, without a tangible physical object, it would be difficult for us to concretely showcase the team’s hard work and achievements to the outside world. Similarly, the carefully selected images in the book immediately capture the reader’s attention; they are the most intuitive language for conveying emotions and stories.

Q: What advice would you give to graduates about entering the workforce?

A: I would advise graduates to explore their interests and not to worry too much. Society is full of opportunities just waiting to be discovered. Service-learning is an excellent way to prepare for this; it allows students to gain an early understanding of how society really works and to steel themselves mentally, thereby reducing their anxiety about the unknown.

Q. Have any new changes or trends occurred since the Centre was established?

A. Two significant improvements. At the beginning, we actively promoted service-learning to teachers. By now, more departments and faculty members cometo us to incorporate it into their courses. Second, there is an increased student participation. Service-learning started in just 10–20% of courses. Now, far more courses — even entire courses and overseas projects — are centred on it.

Q. How does the Centre identify partners and develop mutually advantageous relationships?

A. Our team has existing networks and we find partners through it, and through referrals from existing partners. To create a win-win situation, we explicitly state how partners will benefit (e.g., more visibility), leverage media coverage to assist small NGOs in raising donations, and make the collaboration a two-way value exchange, rather than a one-way exchange.

Q. What are the challenges or opportunities of artificial intelligence (AI) in service-learning?

A. The opportunity is that AI can handle a variety of executive tasks, such as scheduling and simple research, which significantly enhances efficiency. The problem is that service-learning is aimed at nurturing empathy, which AI is not able to offer yet with a human touch. The two are however not mutually exclusive. Service-learning can be supported by AI.

Q. What is the balance between serving the community and making sure that students benefit in learning?

A. It is all about planning early. First, the design of the course should be able to match the needs of community partners with the learning objectives. Second, gather student feedback on a regular basis and make adjustments. Third, service-learning courses are more demanding than regular courses, but with proper planning, both objectives can be met, serving the community and educating students.

Q. What challenges did you face when joining CISL?

A. The biggest challenge was the inability to interact face-to-face. Students needed to go out and serve, but during the pandemic, meetings were impossible, and no one knew how to respond.

Q. How did you solve the problem of not being able to meet in person?

A. We learned together with our partners, explored solutions, and kept adjusting along the way.

Q. How did CISL adjust its service methods during COVID-19 (Coronavirus disease 2019)?

A. We shifted from directly serving patients or communities to helping NGOs, and charities with translation work — especially translating medical materials for underserved communities.

Q. What are your hopes for future Translation Workshop students?

A. Thank you to all the students for the sense of fulfilment they bring. Education has great value. I hope students will continue to support this work and remember that setbacks and difficulties are part of growth.

Q. Given AI’s profound impact on language-related fields, how should students respond?

A. Think about what role you want to play in the world, not just your job or title. Know your goals and vision—this will make it easier to navigate industry changes.

Q. How do you feel about this 10th anniversary interview?

A. I feel very honoured to be part of this 10th anniversary interview as it is a significant moment in my life. Thank you for the opportunity to reflect on my work, and I hope to continue sharing updates in the future.

Q. Does the time schedule of service learning align with CISL’s philosophy and expectations?

A. While there are time constraints, we focus more on the quality and impact of service rather than simply pursuing quantity.

Q. How do you balance students’ learning outcomes with community benefits?

A. By having students apply what they learn in class to real service, while ensuring that the service does not harm the community, or partners. We emphasize student autonomy and responsibility.

Q. How do you collaborate with partners? Are there contracts or rules?

A. Most collaborations are based on trust rather than contracts. We rely on early communication and briefings to ensure both sides understand and agree on the content and methods of service.

Q. What do partners think of Hong Kong Baptist University (HKBU) teachers and students?

A. Partners find HKBU teachers and students very caring and willing to go the extra mile. The relationships are warm and meaningful.

Q. Will Artificial Intelligence (AI) replace CISL’s projects?

A. AI will become increasingly important in fields like translation. However, human translators still play an irreplaceable role in understanding cultural and social contexts and in personal interaction. The future should be collaboration, not competition.

Q. How should future Translation Workshop students use technology in their translation work?