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6 Weeks to Silver Ribbon Awareness Month 2025
October is Niemann-Pick Disease Awareness Month and we will be shining a silver light in 2025!
ANPDF
7 days ago3 min read
ANPDF Joins Neurological Alliance Australia
ANPDF is proud to join Neurological Alliance Australia—amplifying our voice for those impacted by Niemann-Pick disease.
ANPDF
Jul 251 min read
Advancing NP-C Care in Australia: Our New Guidelines Page
At the Australian NPC Disease Foundation (ANPDF) , we know that access to accurate, up-to-date medical guidance can make all the...
ANPDF
Apr 42 min read
Historic Milestone: 78th WHA & #Resolution4Rare – A Game-Changer for Rare Disease Patients
Discover how #Resolution4Rare at the 78th WHA is set to revolutionise rare disease care and policy worldwide—offers renewed hope to patients
ANPDF
Feb 124 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...
ANPDF
Jan 211 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.
ANPDF
Dec 22, 20243 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...
Ellie Van Velsen
Dec 18, 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.
ANPDF
Dec 14, 20242 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.
Ellie Van Velsen
Nov 8, 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...
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
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...
ANPDF
Oct 14, 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!
Dave Badcock
Oct 8, 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!
ANPDF
Oct 1, 20242 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.
ANPDF
Sep 25, 20244 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!
ANPDF
Sep 21, 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.
Ellie Van Velsen
Aug 1, 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...
ANPDF
Jul 12, 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...
ANPDF
Jul 1, 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...
ANPDF
Jun 17, 20242 min read