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President’s Address 2023/24

As we gather to reflect on the past year and set our sights on the future, I am filled with pride and gratitude for the journey we
have undertaken together at HSS. It has been a year of transition, progress, and hope, and I am excited to share these key
milestones with you.

1. Transition and Gratitude
2023 has been a pivotal year for HSS, marked by significant transitions as we adapted to the new Code of Governance
mandated by the Charity Council. Such transitions, while necessary, are never easy. Our new Executive Committee members
have taken on the responsibility with determination and resilience, navigating through challenges to ensure that HSS continues
to serve the haemophilia community with dedication. I want to especially acknowledge their tireless efforts and the learning
curves they have faced in stepping into new roles during this period of change.
At the same time, we could not have managed this transition without the unwavering guidance and wisdom of our esteemed
advisors to the Board— Dr. Gan Kim Loon, Dr. Tan Hooi Hwa, Mrs. Wee Ai Choo, and Mr. Freddy Lim Keok Kung. Their deep
experience and counsel have been instrumental in steering us through these changes. On behalf of the entire organization, I
want to extend our heartfelt appreciation to each of you for your invaluable contributions. Your support has provided us with the
confidence and clarity to manage this transition smoothly.
I also wish to express my gratitude to our Executive Committee members – Tang Ying Wei, Chng Gek Cheng, Tan Kai Ern, Foo
Suan Ngee, Dayvid , Ng Leong Chin, and our co-opted members Foo Ji Rong, Gerald, and Alex Tang Wei Ze for their commitment
to our cause. A special mention goes to Ng Leong Chin, who took on the role of Honorary Treasurer when Gek Cheng had to
step down due to health reasons. We are deeply grateful for your unwavering commitment during this critical time.

2. Support and Donors
Our achievements this year would not have been possible without the incredible generosity and continued support of our
donors. We are deeply thankful to SymAsia Foundation Limited, The Reuben Meyer Trust Fund, the students and staff of
Hillgrove Secondary School and many other donors for their steadfast support. Traditionally, donations have flowed through
networks of the Executive Committee, but with the change of the Executive Committee members comes new challenges. We
must rally together to ensure the sustainability of our fundraising efforts. Let us stand united in our mission to support our
community.

3. Streamlining Operations for Efficiency
Our new Executive Committee team is committed to enhancing the efficiency of our operations. We have been focused on
streamlining processes to ensure that we make the best use of our time and resources. Initiatives discussed in last year’s AGM,
such as utilizing video conferencing for meetings and implementing the IRAS-mandated Donation Management System, are
now in full swing. These advancements allow us to focus more on activities that truly benefit our members, ensuring HSS
remains agile and effective.

4. Advocacy: Amplifying the Voices of Haemophilia Patients
Promoting patient’s and their caregiver’s welfare remains the core of our mission, and this year has been no exception. Our
Executive Committee has actively engaged with key partners such as the Ministry of Health, ACE, Hospitals and other Rare
Diseases Patient Advocacy Groups, with the goal of creating a stronger, united voice for individuals affected by haemophilia.
Looking forward, our advocacy efforts will aim to address key issues that have long been challenges for haemophilia patients.
These include better subsidization of advanced treatments, faster approvals for innovative therapies, and enhanced access to
comprehensive care. By building strong partnerships with government agencies, healthcare providers, and pharmaceutical
companies, we are working tirelessly to remove the barriers that stand between patients and the care they need.

We hope to increase our focus on raising public awareness about haemophilia and the unique challenges our patients face.
Through our various activities and partner advocacy groups such as the World Federation of Haemophilia and the Asia
Haemophilia Network, we aim to help educate the broader community, including healthcare professionals and policymakers.
This is not just about improving treatment options—it’s about changing perceptions and fostering a deeper understanding of
haemophilia across Singapore.

5. Gene Therapy and Alternative Treatments: A Beacon of Hope
One of the most promising developments in haemophilia treatment is the advancement of gene therapy, which is no longer just
an aspiration but a reality fast approaching our shores. I have been informed that SingHealth and the NUH Health System are
preparing to initiate gene therapy trials, which hold the potential to revolutionize treatment for haemophilia. Unlike current
therapies that require regular infusions of clotting factor, gene therapy could offer a long-term solution, potentially allowing
haemophilia patients to live without frequent treatments for bleeds.

In a significant step forward, the Ministry of Health (MOH) has already announced subsidies for gene therapy, starting with
blood cancers. Our goal is to expand this initiative to include haemophilia, which could dramatically improve the quality of life
for our community. By addressing the genetic cause of haemophilia, gene therapy has the potential to transform the way we
approach treatment—not just managing symptoms but correcting the underlying deficiency.

However, bringing these groundbreaking treatments to Singapore requires a collective effort. One of the major hurdles we face
is encouraging pharmaceutical companies to register their gene therapy products locally. This is where our advocacy efforts
will play a crucial role. We are working closely with MOH and pharmaceutical partners to accelerate the availability of these
therapies, ensuring that Singaporean haemophilia patients have access to the same cutting-edge treatments available globally.
While gene therapy represents an exciting future, we are fortunate to already have extended half-life therapies and non-factor
replacement therapies like emicizumab as part of the treatment protocol here in Singapore.

These therapies have been a tremendous step forward for many of our members, offering more convenient dosing schedules, fewer infusions, and improved quality of life. We are proud of the progress Singapore has made in adopting these treatments, but we remain committed to
advocating for continued innovation and accessibility to ensure all haemophilia patients benefit from the latest advancements.

6. Together, We Transform
HSS continues to evolve, driven by our shared commitment to serving our members and the broader haemophilia community.
But we cannot do it alone. We need your continued support, whether through volunteering, offering your expertise, or simply
raising awareness. Every effort, big or small, plays a crucial role in strengthening our organization and helping us meet the
needs of those we serve.

In Closing
As we look ahead, I invite each of you to be an active participant in our journey. Together, we will continue to make a difference
— through every step we take, every advocacy effort we pursue, and every supportive gesture we offer. Thank you for being an
essential part of this remarkable community and for your unwavering support.
Together, we will keep moving forward.

Chee Chun Woei
President