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ANPDF
7 days ago1 min read
Pfrieger's Digest | Issue 12 - August 2024 – December 2024
Summaries of latest research advances related to Niemann-Pick diseases, acid sphingomyelinase deficiency (ASMD) and Niemann-Pick type C...
25 views
ANPDF
Dec 22, 20243 min read
Reflecting on a Year of Progress: ANPDF’s 2024 Highlights
Reflecting on 2024: ANPDF’s progress in advocacy, fundraising, and community support. Looking ahead to a brighter future for NPC in 2025.
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Ellie Van Velsen
Dec 18, 20242 min read
NP-C Corner: Hope on the Horizon
“Just go home and make memories” These words have rung in the ears of parents as a doctor drops a life-changing diagnosis of Niemann-Pick...
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ANPDF
Dec 14, 20242 min read
Honouring Mala Singh’s Wish: A Legacy of Hope
Mala Singh’s $5,000 donation honours her wish for a cure for Niemann-Pick Disease.
64 views
Ellie Van Velsen
Nov 8, 20243 min read
NP-C Corner: Unpacking the Blood-Brain Barrier – A Key to NPC Treatment
The blood-brain barrier is a roadblock in NPC treatment, but new strategies aim to safely deliver therapies directly to the brain.
76 views
ANPDF
Oct 18, 20243 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...
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ANPDF
Oct 15, 20244 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.
171 views
ANPDF
Oct 15, 20242 min read
Exciting News: New INPDR Site Opening in Melbourne for Niemann-Pick Disease
15 October 2024 - INPDR, Tyne & Wear England. We are thrilled to share the announcement of a significant development in the fight against...
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Dave Badcock
Oct 8, 20242 min read
NP-C Corner: Genetic Counselling and NPC
We invited our favourite Melbourne University volunteer to share his thoughts in this special edition of the NP-C Corner. Check it out!
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ANPDF
Oct 1, 20242 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!
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ANPDF
Sep 25, 20244 min read
Second treatment approved by FDA for Niemann-Pick disease, type C: Introducing AQNEURSA
FDA approval of AQNEURSA offers new hope for Australian families with Niemann-Pick disease, promising better treatment and quality of life.
97 views
ANPDF
Sep 21, 20242 min read
A New Hope for NP-C Families: Introducing Miplyffa
New Hope for NP-C Families: Miplyffa, the first FDA-approved treatment for NPC, offers a promising future for our loved ones. Stay informed!
105 views
Ellie Van Velsen
Aug 1, 20242 min read
NP-C Corner: Global Research is Lacking
Limited clinical trial opportunities and a decrease in global trials over the past 5 years means advocacy has never been more crucial.
31 views
ANPDF
Jul 12, 20242 min read
In Honour of Sebastian Chamberlain, 24yo, NP-C
12th February 2000 to 12th July 2024 It is with heavy hearts that we announce the passing of Sebastian Chamberlain, who peacefully left...
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ANPDF
Jul 1, 20242 min read
2024 NPC Conference: Advancing Research and Care for Niemann-Pick Disease
The 2024 NPC Conference, hosted by the Australian NPC Disease Foundation (ANPDF), took place at the Florey Institute of Neuroscience and...
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ANPDF
Jun 17, 20242 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...
159 views
ANPDF
May 27, 20241 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...
184 views
Ellie Van Velsen
May 8, 20244 min read
NP-C Corner: Living with Loss
There is no perfect grief guide for when this day comes, but there is information that can help people understand how to navigate grief.
47 views
Ellie Van Velsen
Apr 8, 20243 min read
NP-C Corner: Losing the ability to eat safely
Sometimes you never realise what you have until it’s gone. Join Ellie as she explores what PEG feeding means for those living with NP-C.
85 views
ANPDF
Apr 2, 20242 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...
89 views