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.
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Community News and Events
Welcome to the ANPDF blog, where we share the latest updates, stories, and breakthroughs in the fight against Niemann-Pick Disease. Join us as we raise awareness, support families, and drive research forward.
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ANPDF
Jun 172 min read
In the media: 'Born with a rare genetic disease, Noah in fight for better future'
By Robyn Riley (Herald Sun Medical Editor), June 16, 2024. Read the full article here. Imagine a young boy named Noah, only seven years...
155 views
ANPDF
May 271 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...
169 views
ANPDF
Apr 22 min read
In the media: 'Creating community while in search of a cure'
"Smart thinker: Creating community while in search of a cure" - By Elli Jacobs (MiNDFOOD), Sunday March 17, 2022. Read the full article...
82 views
ANPDF
Mar 102 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,...
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ANPDF
Feb 41 min read
In Honour of Mala Singh, 45yo, NP-C
25th May 1978 to 4th February 2024 We are deeply saddened to announce the passing of Mala Singh, a beloved member of our community, who...
122 views
ANPDF
Feb 6, 20231 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...
187 views
ANPDF
Dec 13, 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...
67 views
ANPDF
Nov 7, 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...
331 views
ANPDF
Oct 22, 20222 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...
26 views
ANPDF
Sep 18, 20221 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
164 views
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.
330 views
ANPDF
Jan 10, 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...
23 views
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