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Reflections from the 2025 Australian Niemann-Pick Conference
The 2025 Australian Niemann-Pick Conference brought together families, clinicians, and researchers for two days of powerful connection, cutting-edge science, and shared lived experience. Highlights included the launch of Australia’s first NPC care standard, moving keynote talks, and vital updates on global clinical trials.
ANPDF
Jun 263 min read
Raising Awareness for Niemann-Pick Disease: The Meaning and Importance of the Silver Ribbon
As an organisation passionately dedicated to spreading awareness about Niemann-Pick Disease, we are thrilled to delve into the...
ANPDF
Oct 18, 20243 min read
Silver Stories: Greg's Journey Living with Niemann-Pick Disease
Despite Niemann-Pick Disease, Greg’s family remains resilient, providing care, love, and hope for him and others affected by NPC.
ANPDF
Oct 15, 20244 min read
Niemann-Pick Awareness Month 2024: Shining a Silver Light on NPD
October is Niemann-Pick Disease Awareness Month and we will be shining a silver light in 2024!
ANPDF
Oct 1, 20242 min read
A Night of Hope: Minds in Motion Charity Cocktail
On June 22, 2024, the Australian NPC Disease Foundation (ANPDF) hosted the Minds in Motion Charity Cocktail in Port Melbourne at The...
ANPDF
Jul 1, 20242 min read
In the media: Deanna Carpino Interview with Tony Tardio on Italian Il Globo
Many of you may know Tony Tardio as the newsreader on Melbourne’s radio station 3AW, however he also has another hat as a presenter of a...
ANPDF
May 27, 20241 min read
In the media: Vertigo drug could be used to treat Niemann-Pick type C disease, known as ‘childhood Alzheimer’s’
By Sarah Booth (Herald Sun), March 10, 2024. Read the full article here. Melbourne, Victoria – In a significant medical breakthrough,...
ANPDF
Mar 9, 20242 min read
NP-C Corner: Everyone deserves to be seen
Do you use person-first or identity-first language? Ellie shares how she learned to be more inclusive of people with disabilities.
Ellie Van Velsen
Feb 8, 20242 min read
Happy NP-C Month! Niemann-Pick Awareness Month is Coming.
October is Niemann-Pick disease type C Month to raise awareness for those living with and dying from NP-C.
ANPDF
Sep 15, 20232 min read
NP-C Corner – What did you inherit?
When I say the word “genetics”, what comes to mind? You may already be familiar with the word “gene” or maybe “DNA” but what do these...
Ellie Van Velsen
Apr 21, 20233 min read
NP-C Corner: Carer Health – You’re important too
I understand that a large portion of readers will be parents, carers, or family members of somebody with NP-C. Therefore, I don’t need to...
Ellie Van Velsen
Mar 19, 20233 min read
Welcome to NP-C Corner
This is the first of (hopefully!) many blog posts to come. Who am I? My name is Ellie. I have two cousins who were diagnosed with...
Ellie Van Velsen
Mar 5, 20232 min read
Diagnosis Day - Full series out now
A seven-episode series following Aussies with rare genetic conditions, as they search for answers, options and community. This year, one...
ANPDF
Dec 13, 20221 min read
In the media: ‘How do I tell my kids they won’t grow up?’
"How do I tell my kids they won't grow up" - By Rebecca Whitefield-Baker (Adelaide Now), Sunday November 6, 2022. Read the full article...
ANPDF
Nov 7, 20221 min read
Ultimate Legends Boxing Night with Nik from Derrimut 24:7 Gyms
ANPDF Stall at Legend Promotion's Ultimate Legends Boxing event.
ANPDF
Oct 23, 20221 min read
October is Niemann-Pick Disease Awareness Month
October is Niemann-Pick Disease Awareness Month. We are prepared to take our fight all the way! Will you join us?
ANPDF
Sep 28, 20222 min read
In the media: Brave Mum of 3 children with Niemann-Pick disease type C
Brave mum of 3 children with NP-C shares her story with ABC News.
ANPDF
Sep 18, 20221 min read
In the media: New Hope for Children with Rare Diseases
"Game changer for kids with rare diseases" - Story by Alanah Frost, Herald Sun Images by Jay Town, Herald Sun Read the full article here....
ANPDF
Feb 27, 20202 min read