Phua Wee Seng, Executive Director and Chief Rare Advocate of RDSS, shares the purpose and passion that drive his work in championing the rare disease community.
The Rare Disorders Society (Singapore) or RDSS has made significant contributions to the rare disease community as Singapore’s first and only non-profit organisation dedicated to supporting all individuals affected by rare diseases. Its annual hallmark Carry Hope Campaign successfully concluded in February 2025, raising over S$125,000 in support of the rare disease community. We speak with the Executive Director and Chief Rare Advocate of RDSS, Phua Wee Seng, to learn more about what drives his meaningful work.
What is your role at RDSS, and how has the organisation evolved under your leadership alongside the rest of the team?
As the Executive Director and Chief Rare Advocate, I oversee day-to-day operations at RDSS. What’s unique at this stage of RDSS’s journey is our transformation towards becoming a more holistic and structured patient organisation – one that supports rare disease families and drives systemic change through advocacy, partnerships, and service development.
Unlike patient support groups (PSGs) and patient advocacy groups (PAGs), which are often volunteer-led and ad-hoc, we’ve structured ourselves more formally in terms of work processes and manpower allocation, especially after securing our Institutions of a Public Character status three years ago. In addition to streamlining work processes and bringing in new talent to meet growing demands, this shift also required us to evolve as an organisation – establishing clearer structures, formal roles, and responsibilities in line with our strategic direction.
Our annual flagship Carry Hope Campaign also underwent a significant transformation which reflected our organisation’s growth. Over the past three years, collaborations and inquiries have increased, and we’re seeing more than 10% year-on-year rise in patients joining RDSS. It’s a happy “problem” because it shows that our work is reaching those who need it most: the rare disease community. That’s why we’re constantly working to improve RDSS in ways that provide better support to improve the lives of those we serve.
How has strategic communication shaped public understanding of rare diseases?
To begin, communication is the foundation of RDSS’s advocacy work. Patient stories often go unheard, and strategic communication is what allows us to give voice to experiences that most people have never encountered firsthand. It’s not just about highlighting the daily challenges, but also the community’s resilience and strength, with respect and dignity. By articulating both rare disease patient challenges and their needs clearly, we help society understand how it can play a role in helping these individuals thrive.
Some see communication as a silver bullet, but it’s a journey. Over the years, we’ve learned to sharpen our approach: to focus not on listing every hardship, but on leaving our audiences with one or two powerful takeaways that could foster empathy and action. Strategic storytelling, when done well, makes people see their stake in building a more compassionate and inclusive society, not just for those with rare diseases, but for all who may one day face the margins.
Were there any pivotal moments that solidified your commitment to your line of work?
On a personal level, joining the Equity Initiative Fellowship was pivotal. This leadership programme on health equity and social justice opened my eyes to the structured power of advocacy, beyond the local context. Learning from movements like post-apartheid South Africa reshaped my understanding of the role of advocacy in creating systemic change.
Professionally, a turning point came with RDSS’s annual Carry Hope Campaign. While we were encouraged by the growing number of families joining us, it also raised a deeper question: How can we support them in a more meaningful way? Their trust in us – and the way they turn to us for help – reaffirmed my commitment to advocate for and uplift this often-overlooked community.
That reflection eventually led to the launch of our social work department a year ago. Since then, we’ve visited over 70 families, offering tailored support programmes based on their lived experiences. Their feedback has been affirming. Many shared how these efforts opened up new possibilities for their lives. These conversations also helped us design gap-filling initiatives such as co-payment schemes to ease the costs of essential home care/medical equipment, which can be financially crippling.
Together, these moments have deepened my belief in the value of advocacy, not just in raising visibility, but in driving tangible, life-changing support for families navigating rare diseases.
One lesson that you have learned which has impacted your approach to advocacy work?
One key lesson I’ve learnt is that collaboration and partnership are essential, especially when navigating the complex, interconnected environment and challenges like those faced by the rare disease community. Issues like healthcare, education, employment and accessibility in public spaces don’t exist in silos. Addressing one often affects another, and trade-offs are sometimes inevitable.
No single individual or organisation can tackle these systemic issues alone. While I’ve always believed in the power of collaboration, my journey and work at RDSS have deepened that conviction.
That being said, true impact comes when we find the right partners and move beyond transactional relationships to purpose-driven collaboration. That’s where our efforts and initiative become sustainable, impactful and meaningful!
What do you think is the key to building lasting partnerships?
The answer is simple – trust. We trust that we can rely on each other’s strengths in times of need, and that we are stronger together to reach our common goal to make an impact. That’s how lasting partnerships are built.
However, trust takes time to build, and it is nurtured through consistent, open communication, integrity, and a shared commitment to a common goal.
Is there a time when a collaboration led to an unexpected breakthrough?
One example would be the Carry Hope Campaign, through our partnership with Socium. And I’m not just saying this because this interview is led by them! Jokes aside, there was genuine joy in the collaboration.
Throughout the process, RDSS felt truly supported. There was synergy and trust, and we know that no matter how complex the task, we could turn things around quickly together. That trust in Socium to deliver was not misplaced, and the results we achieved spoke for themselves. We exceeded our performance indicators, including achieving a PR value that we have never reached before.
What stood out even more was how the team showed up – not just in strategy, but physically, running alongside us in the rain for the Walk & Run event and sharing in the highs and lows of the campaign. We even caught a rainbow together at the finishing line!
Another recent example would be the Canvas of Hope campaign where, together with Socium, we were able to reach out and collaborate with “The Invisible Man”, Mr. Liu Bolin, a world-renowned Chinese contemporary artist to bring invisibility to the fore like the rare disease community.
To me, this partnership was an unexpected breakthrough in itself. It wasn’t just about achieving strong outcomes, but the way we got there. The collaboration brought an unexpected sense of ease and joy to what is typically a stressful campaign period. That level of mutual support reminded us that with the right partner, we can go further, faster, and with a lot more heart.
What is one tough call that you had to make as a leader, and how did you approach it?
One tough call I’ve had to make as a leader is learning when to say no. As RDSS’s advocacy work gained traction over the years, we started receiving a growing number of partnership and collaboration requests. In the early days, it was tempting to say yes to everything, especially as a small organisation eager to gain visibility. But over time, we realised it wasn’t sustainable.
We had to take a step back and sharpen our vision, mission, and values. Now, we make it a point to communicate these clearly from the start of any engagement. It takes courage to say no, especially to well-intentioned opportunities. But sometimes, those requests, while valid, are ahead of where we are or outside what we can realistically deliver. Staying focused has helped us protect our energy and resources for the work that matters most.
On a Personal Note
What’s something that you’ve learned in your leadership journey?
One key lesson I’ve learned in my leadership journey is that leaders don’t need to have all the answers. When I was younger, I thought leadership meant always knowing what to do. But especially today, with information so accessible through the internet and AI, that’s no longer realistic or necessary.
I’ve come to see leaders as the first learners. The real skill lies in asking the right questions, staying curious, and leaning on the expertise of others – whether it’s employees, partners, or peers. Leadership, to me, is about listening, learning, and then guiding others forward with clarity and humility.
Leadership, to me, is about listening, learning, and then guiding others forward with clarity and humility.
Outside of advocacy, what brings you joy or helps you unwind?
I take pleasure in simple things in life. These days, it’s catching a good show with my family. It’s become a bit of a tradition for us. The most recent one we caught was Disney’s Lilo and Stitch, and before that, we really enjoyed the Chinese animated film, Nezha 2. It’s a small ritual, but it means a lot. It’s our way of slowing down and reconnecting amidst the busyness of things.
What’s your go-to comfort meal?
When I’m unwell, my go-to would be plain porridge with pickles, vegetables and some olives. That’s what I used to have when I was younger, so it’s very nostalgic and comforting for me. Otherwise, instant noodles would be my go-to for late-night cravings.
One thing that people would be surprised to learn about you?
That I can whip up pretty good meals. Not just instant noodles! My family, and my kids especially, really enjoy my signature Italian dishes – the traditional style carbonara and risotto.
When facing setbacks or tough periods, where do you draw resilience from?
I draw a lot of strength from my family. One thing we’ve kept sacred is our family dinner time – it’s our protected space to reconnect. Most evenings, we ask three simple questions: What made you happy today? What made you feel lousy today? And what’s one thing that you’re grateful for today? It’s been a grounding routine that brings perspective and keeps us close.
One moment that really stayed with me happened last year. My daughter, who used to write in her birthday cards that I was the family’s “pillar of strength”, surprised me by saying that she’s now grown enough to be my support too. That really moved me. It reminded me how far we’ve come, and how even the ones we once carried can grow to carry us in return.
The Suite Spot is Socium’s series of interviews that look into the minds of C-suites. What drives their business strategies and their decision-making process? What role does communications take in their plans and what is their impact on the organisation’s success? Last but not least, how do these leaders walk the talk?
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