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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
18 views
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
36 views
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
16 views
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
62 views
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
64 views
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
85 views
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
24 views
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
179 views
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 15, 20242 min read
9 views
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
21 views
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
90 views
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
111 views
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
110 views
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
31 views
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
141 views
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
40 views
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
161 views
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
195 views
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.
Ellie Van Velsen
May 8, 20244 min read
47 views
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.
Ellie Van Velsen
Apr 8, 20243 min read
85 views