Haemophilia Society of Singapore

20/08/2026

What does gene therapy mean for the future of haemophilia care?

That was the focus of HSS’ latest educational webinar, where we were very pleased to welcome Professor Cihan Ay from the Medical University of Vienna, Austria.

Around 40 members of our community joined us, including friends from the Hemophilia Society of Malaysia, to hear Prof Cihan explain the science behind gene therapy, share results from global clinical trials, and discuss Austria’s experience with gene therapy as a clinical treatment option.

The Q&A that followed was particularly engaging, with lots of thoughtful questions from participants. In fact, there were so many questions that we ran about 10 minutes over - and everyone stayed right to the end!

A big thank you to Prof Cihan for sharing his expertise and experience with us, and to everyone who joined and contributed to the discussion.

We've uploaded Prof Cihan's presentation slides to our website for anyone who would like to learn more or refer back to the material.

👉 https://haemophilia.org.sg/

21/07/2026

What exactly is gene therapy, and what could it mean for people living with Haemophilia B?

Gene therapy is one of the most talked-about developments in haemophilia care today. As research continues and treatment becomes available in more countries, many people are asking what it involves, who it may be suitable for, and what current evidence tells us.

Join us for a special educational webinar hosted by the Haemophilia Society of Singapore (HSS), featuring Professor Cihan Ay from the Medical University of Vienna, Austria.

Professor Ay will share:
🩸 An introduction to how gene therapy works in haemophilia
🩸 Results from the global, multi-year clinical trials
🩸 Austria's experience in making gene therapy available as a clinical treatment option
🩸 A live Q&A session where participants can ask questions

The details:
📅 Wednesday, 19 August 2026
🕣 8.30pm Singapore Time (SGT)

Following the wonderful response to our recent regional travel webinar, we're once again delighted to welcome members of our community from Singapore 🇸🇬, the Hemophilia Society of Malaysia 🇲🇾, Thailand 🇹🇭 and Brunei 🇧🇳 to join us!

Whether you're living with haemophilia, a caregiver, or simply interested in learning more about this rapidly evolving area of care, we hope you'll join us.

👉 Register here:

19/07/2026

Here are 2 great articles by Berita Harian profiling both Dr Cheryl Lim from NUH (a familiar face for our NUH members I'm sure!) and one of our younger HSS members Irfan Sulaiman.

Enjoy!

https://www.beritaharian.sg/singapura/kesihatan/hemofilia-gangguan-pembekuan-darah-luka-kecil-risiko-besar
https://www.beritaharian.sg/singapura/kesihatan/darah-sukar-beku-remaja-urus-penyakit-usia-dua-tahun

Ketahui tentang hemofilia, gangguan pendarahan genetik, jenisnya, kesan komplikasi, dan pilihan rawatan terkini untuk meningkatkan kualiti hidup.

19/07/2026

Haemophilia has gotten quite a bit of press coverage this year with the launch of HSS' study: Living with Haemophilia in Singapore. We'll progressively share the articles here for you all to read.

Great to see awareness - and support - of this rare disease growing!

27岁的黄卿洲是个阳光青年，然而，这个爽朗的工程师每踏出一步都得小心翼翼，因为他是一名重型甲型血友病患者。由于体内缺乏凝血因子，任何一个磕碰或长时间行走，都可能对血友病患者带来严重后果。

12/07/2026

🎬 Thank you for being part of another memorable HSS Film Premiere!

Seeing around 170 members, families, healthcare professionals, donors, volunteers and friends of HSS come together was a reminder that our community has always been built on people who are willing to support one another ❤️

Before the movie, our President Gerald took a moment to recognise HSS's 41 year anniversary, and the people who made that possible. From volunteers who generously give their time, to donors whose support enables our work, to healthcare professionals and caregivers who provide critical support: thank you 🙏🏼 HSS would not be where it is today without you.

A special thank you also goes to our incredible on-the-day team - Leong Chin, May, Kim, Yin, Jonathan, Gerald and their families - for welcoming guests, managing ticket and combo collection, and calmly handling all the last-minute seating requests that inevitably come with an event of this size!

And of course thanks to everyone who came down for the show. We hope you enjoyed the film, and we look forward to seeing you again at future HSS events.

Here's to continuing to build a strong, connected haemophilia community together ❤️

20/05/2026

🎬 HSS Movie Premiere Fundraiser 2026

HSS is hosting our annual film fund raiser this July with a special screening of Minions & Monsters in support of the haemophilia community here in Singapore.

Beyond medical care, many families continue to navigate the less visible realities of living with haemophilia - school, work, independence, travel, and the ongoing mental and emotional load of living with a chronic illness.

This is reflected in many within our community, including Irfan, a young aerospace engineering student living with severe haemophilia. As he works through his studies, he has to manage treatment, caution, and a part-time job to help cover the cost of his treatment... in addition to the everyday realities of growing into adulthood.

This is the space HSS is expanding our focus to: strengthening not just clinical outcomes, but also the ability of individuals and families to navigate school, work, independence, and daily life with greater confidence and less isolation.

🎬 Movie: Minions & Monsters (PG)�
📅 Date: Sunday, 12 July 2026 (est. start time 2-3pm, tbc 2 weeks prior)�
📍 Venue: Shaw Theatres Lido, 350 Orchard Road, Singapore 238868

We welcome contributions through donation tiers of $50 / $100 / $200, with each contribution including movie admission and a popcorn combo as a token of appreciation. If you would like multiple tickets, please email us at [email protected]

How to Donate:
PayNow – UEN: S85SS0047A (Haemophilia Society of Singapore)
Alternatively, via our giving.sg campaign page: https://www.giving.sg/donate/campaign/hss-film-screening-2026

All proceeds from the charity film screening go directly to supporting treatment costs.

Thank you for supporting a stronger, more connected community!

Read Irfan’s story here: https://www.channelnewsasia.com/today/voices/haemophilia-student-paper-cut-bleed-profusely-full-life-rare-blood-condition-6060156

20/05/2026

Hear Melvin and Kheng Chew share their perspectives of growing up with Haemophilia across different generations in 🇸🇬 on MSN!!

13/05/2026

✈️ Planning to travel? Join us for a practical webinar for patients, caregivers, and families with haemophilia.

Whether it’s a short holiday, school trip, or business travel, preparing ahead can help reduce stress and make travelling more manageable and enjoyable.

In this short session, we’ll cover practical topics including:
🩸 Medication planning
📄 Travel letters & documentation
🛄 Airport and security considerations
🚑 Emergency planning abroad
💬 Tips from lived experiences

📅 Thursday, 28 May 2026
🕕 6:00 PM – 7:00 PM (GMT+8)
💻 Online via Zoom

We also warmly welcome members of the haemophilia communities in Malaysia 🇲🇾 and Brunei 🇧🇳 in our inaugural joint session (with hopefully more to come!), and look forward to learning together across the region.

👉 RSVP here: https://calendar.app.google/3R6FETmNH5AGVdP16

05/05/2026

Great perspective from The Wellness Insider following the launch of our Living with Haemophilia in Singapore 🇸🇬 report last month!

A new national study reveals how people living with haemophilia in Singapore face mobility challenges, mental load and caregiver strain — and why holistic support matters.

04/05/2026

🌏 Learning, sharing, and bringing it home 🇸🇬

Last week, members of the haemophilia community from Singapore were in Kuala Lumpur for the World Federation of Haemophilia global Congress.

It was great to see strong representation from across our healthcare system - clinicians and therapists from SGH, KKH, and NUH - alongside a small HSS delegation from our ExCo and members.

Across the few days, the breadth of conversations was striking. From medical and musculoskeletal care, to dental, nursing, and laboratory sciences, alongside important discussions on psychosocial support, and women and girls with bleeding disorders.

But beyond the sessions, what stood out was the opportunity to connect with other patient groups, especially from across Southeast Asia.

In Singapore, we’ve made real progress in access to diagnosis and treatment. But just a few hours away, many are still facing much more fundamental challenges - late or missed diagnosis, limited access to treatment, and in a number of cases a dependence on humanitarian aid.

Despite our differences, there was still a lot of that felt similar. The desire to live a “normal” life. The daily trade-offs people make. The quiet but constant burden carried by caregivers. And the role that community plays in making all of this a little more manageable.

These exchanges matter. They help us see both how far we’ve come, and where we can continue improving. Not just in treatment, but in how people are supported to live, study, and work with confidence 💪🏼.