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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
In honour of Will Swanson, 6yo, NP-C
20th January 2017 to 5th February 2023 The Australian NPC Community share their hearts and condolences with the Melbourne-based family of...
ANPDF
Feb 6, 20231 min read
10 Sugar-Free Recipes for Christmas Treats
Join the sweet side of holiday cheer with these recipes! Some of our NPC Warriors are able to take a treatment to help delay the onset of...
ANPDF
Dec 19, 20221 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
Intrabio Media Release | December 5, 2022
"IntraBio Ltd. is pleased to confirm that it has completed recruitment for its Pivotal Trial, Effects of N-Acetyl-L-Leucine on...
ANPDF
Dec 6, 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
"I Need My Village" - ANPDF answers the call
It takes a village to raise a child, so they say. But when your village is trapped in another country by circumstance and rising airfare...
ANPDF
Oct 22, 20222 min read
Pfrieger's Digest | Issue 7 - September 2022
Pfrieger's Digest for Niemann-Pick type C: Summaries of research advances on selected peer-reviewed publications in scientific journals....
ANPDF
Oct 10, 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 honour of Noah Fox, 8yo, NP-C
Today, our hearts go out to the Melbourne-based family of eight-year-old Noah. This NPC angel passed away Saturday morning due to complicati
ANPDF
Sep 18, 20221 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
New Volunteer Projects Available!
Check out our new projects page where you can read more about our latest projects that need some good ol'fashioned volunteer power. We...
ANPDF
May 30, 20221 min read
New NPC Champion: Urban Caravans
The ANPDF is proud to welcome Urban Caravans as our newest NPC Champion! Through a familial connection from one of our general committee...
ANPDF
Apr 4, 20221 min read
In honour of Sebastian Moroney, 3yo, NP-A
Our hearts go out to a Sydney based family whose little boy had "defied predictions" about his life expectancy only to become the...
ANPDF
Jan 10, 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 28, 20202 min read