Reflections from the 2025 Australian Niemann-Pick Conference

ANPDF
Jun 26, 2025
3 min read

Three women seated in a colorful auditorium smile warmly. One wears a patterned dress, another a white coat, and the third a dark sweater. — Ali, Mandy, and Deanna at the 2025 Australian Niemann-Pick Conference.

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.

Two people seated on stage discussing art. A vibrant painting with blue, yellow, and orange hues leans against a dark wall. — Felicity interviews Caroline from Creative Art Therapy Australia during the final presentation of the conference, with Caroline's artwork prominently displayed beside them.

🍽️ 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.

Group of people smiling at a table in a vibrant, crowded venue with colorful lights. Plates and drinks on the table, live music in the background. — Our families gathered at Bird’s Basement for a lively farewell dinner, enjoying music and great company.

🎥 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

Child and adult hugging and smiling in a colourful room.

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

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