The Australian NPC Disease Foundation hosted an inspiring event this year, the 2023 NPC Conference, which took place at the prestigious Florey Institute of Neuroscience and Mental Health. This conference was a significant occasion for patients, clinicians, and researchers, providing a platform to share the latest clinical and research updates on Niemann-Pick disease.
The conference spanned two days, from June 1st to June 2nd, and was filled with informative sessions and heartfelt stories. It was attended by 50 people from various walks of life in the NPC community both in-person and virtually.
The mornings were dedicated to keynote speakers who are at the forefront of NPC research, followed by panel discussions on upcoming clinical trials and research developments. These sessions offered insights into the progress being made in the fight against NPC and the potential treatments on the horizon.
The afternoons were reserved for focused panels discussing the care and management of NPD. These discussions were particularly valuable as they included perspectives from allied organizations and individuals living with the disease, providing a holistic view of the challenges and solutions in managing NPD.
The Australian NPC Disease Foundation has been instrumental in bringing attention to NPC and supporting those affected by it. Their efforts in organizing the 2023 NPC Conference have not only facilitated knowledge sharing but also fostered a sense of community among those impacted by this rare disease.
As we look to the future, the outcomes of the 2023 NPC Conference will undoubtedly influence the direction of NPC research and patient care. The dedication of the Australian NPC Disease Foundation and the collective efforts of the NPC community give us hope for a future where Niemann-Pick disease is no longer a daunting diagnosis but a manageable condition.
Acknowledgments
The ANPDF is grateful to their key partners and sponsors that enabled the attendance of our patients from all over Australia both in-person and virtually.
Venue Partner - The Florey Institute of Neuroscience and Mental Health
Major Sponsor - National Disability Conference Initiative Grant funded by the Australian Government Department of Social Services
Contributors - Soroptimist International of Melbourne, Machine Screen Printers
Thank you to the organising committee; Deanna Carpino, Andrew Carpino, Ya Hui Hung, Pip Johnston, Joy Lee, Mark Walterfang, and Mandy Whitechurch - for their tireless hours that were volunteered for the success of this event. Special mention to first-time ANPDF volunteer, Tailah Griffin, for her help on the day as both photographer and attendee coordinator and returning host, Felicity Munro. Thank you to all the new and returning speakers who kindly gave their time to delivering their experience and expertise to our Australian audience. Thank you to all involved.
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