Reflections from the 2025 Australian Niemann-Pick Conference
- ANPDF
- Jun 26
- 3 min read
On June 12–13, the Australian NPC Disease Foundation (ANPDF) proudly hosted the 2025 Australian Niemann-Pick Conference—a two-day hybrid event held at The Florey Institute of Neuroscience and Mental Health in Melbourne and streamed online for a global audience.
Bringing together families, clinicians, researchers, allied health professionals, and advocates, the conference served as a powerful reminder of what community-driven collaboration can achieve. With over 50 attendees participating in person and many more joining virtually, this year’s program was our most ambitious and inclusive to date.
🔍 Highlights Included:
🧡 Keynote by Prof. Marc Patterson, who shared a global perspective on the past, present, and future of Niemann-Pick Type C (NPC) treatment and advocacy.
🧠 Cutting-edge research updates from leaders like Dr Ya Hui Hung (mRNA gene therapy), Dr Juliana Chaves (patient-derived cell models), and Dr Michael Tchan (emerging therapies).
🎤 Lived experience talks from Ali Malone and Mandy Whitechurch reminded us of the humanity behind the science, touching hearts and inspiring action.
📘 Launch of Australia’s first Standard of Care for NPC, led by Ellie Van Velsen, marking a historic milestone in NPC care.
🎨 Creative reflections from Caroline Liuzzi (CATA) explored how art therapy supports legacy-building and emotional wellbeing in paediatric palliative care.
📈 Clinical and advocacy sessions, including updates from Azafaros, IntraBio, and global organisations such as the INPDA and INPDR, underscored the power of collaboration across borders.
🍽️ Community Dinners
This year, we also hosted three special dinners for families and carers on Wednesday, Thursday, and Friday evenings. These gatherings provided much-needed space for connection, laughter, reflection, and informal peer support. For many families, they were a rare opportunity to sit around the table with others who understand the journey of living with or caring for someone with NPC.
🎥 Watch the Conference On-Demand
If you missed the conference—or want to revisit your favourite sessions—some presentation recordings are now available via our official YouTube playlist:
📺 Watch here: 2025 NPC Conference Playlist
🤝 With Thanks to Our Sponsors
We are incredibly grateful to the sponsors and partners who made this event possible:
Venue Partner: The Florey Institute of Neuroscience and Mental Health
Major Sponsors: Cyclo Therapeutics, IntraBio
Contributor Sponsors: Azafaros, Capital Industry Group
Printing Sponsor: Enviro Print Group
Gift Bag Sponsors: OzDare, Goat Club
Grant Support: National Disability Conference Initiative Grant funded by the Australian Government Department of Social Services
Thanks to their generosity, the ANPDF was able to support Niemann-pick families to travel from regional areas and interstate to attend in person—covering flights, accommodation, most meals, and event access.
⛳ Up Next: ANPDF Charity Golf Day
Our next big event is already teeing up! Join us for a relaxed and impactful day on the green at the 2025 ANPDF Charity Golf Day, raising vital funds for families impacted by Niemann-Pick disease.
📅 Friday, 3 October 2025
📍 Mt Derrimut Golf & Community Club, Melbourne
🏌️♂️ Limited spots available!
👉 Learn more and register: www.npcd.org.au/golfday
💬 Final Reflections
This year’s conference was a testament to the strength of the Niemann-Pick community—grounded in lived experience, led by science, and powered by hope. To everyone who contributed, participated, or tuned in from afar: thank you.
We look forward to continuing the conversation and building on the momentum created in 2025.
🌐 Learn more: www.npcd.org.au
📩 Contact us: info@npcd.org.au
Event Gallery Highlights
Check out some of our special moments below.
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