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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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Childhood Dementia Initiative End of Year Report | February 8, 2024

ANPDF

Feb 91 min read

Childhood Dementia Initiative End of Year Report | February 8, 2024

The Childhood Dementia Initiative (CDI) has made significant progress in 2023, thanks to the dedication of its partners and supporters....

9 views

NP-C Corner: Everyone deserves to be seen

Ellie Van Velsen

Feb 82 min read

NP-C Corner: Everyone deserves to be seen

Do you use person-first or identity-first language? Ellie shares how she learned to be more inclusive of people with disabilities.

22 views

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...

127 views

Zevra Therapeutics Media Release | January 8, 2024

ANPDF

Jan 101 min read

Zevra Therapeutics Media Release | January 8, 2024

Zevra Therapeutics Receives FDA Acceptance Of Resubmission Of NDA For Arimoclomol As A Treatment For Niemann-Pick Disease Type C Read the...

16 views

NP-C Corner: Will I be a lab rat? An exploration of clinical trials in the world of Niemann-Pick.

Ellie Van Velsen

Jan 83 min read

NP-C Corner: Will I be a lab rat? An exploration of clinical trials in the world of Niemann-Pick.

Ellie explores what clinical trials are and how they impact patients of Niemann-Pick diseases.

62 views

ANPDF

Dec 13, 20231 min read

Meet and Greet with Cyclo Therapeutics

The Australian NPC Disease Foundation hosted a meet and greet with Cyclo Therapeutics on Zoom on 12th December.

14 views

Ellie Van Velsen

Nov 8, 20233 min read

NP-C Corner: Storytelling DNA

Our DNA can tell us more information than you might think. As ‘the codebook for life’, it has many stories to tell. Your DNA can give us...

45 views

Happy NP-C Month! Niemann-Pick Awareness Month is Coming.

ANPDF

Sep 15, 20232 min read

Happy NP-C Month! Niemann-Pick Awareness Month is Coming.

October is Niemann-Pick disease type C Month to raise awareness for those living with and dying from NP-C.

98 views

Ellie Van Velsen

Sep 8, 20232 min read

NP-C Corner: Exercise as medicine

There is a big misconception that the point of exercise is to lose weight. This is only one of many benefits exercises can have for our...

51 views

NP-C Corner: A History and Possible Future

Ellie Van Velsen

Aug 8, 20232 min read

NP-C Corner: A History and Possible Future

A History and Possible Future: Explore its captivating history and glimpse into a hopeful future of Niemann-Pick. #NPC #Genetics #Research

67 views

NP-C Corner: Carrier Screening - What are your chances?

Ellie Van Velsen

Jul 3, 20232 min read

NP-C Corner: Carrier Screening - What are your chances?

Ellie explores the definitions and impacts of how Niemann-Pick disease type C is inherited.

101 views

2023 NPC Conference: A Beacon of Hope for Niemann-Pick Disease in Australia

ANPDF

Jul 1, 20232 min read

2023 NPC Conference: A Beacon of Hope for Niemann-Pick Disease in Australia

The Australian NPC Disease Foundation hosted an inspiring event this year, the 2023 NPC Conference, which took place at the prestigious...

4 views

Ellie Van Velsen

Apr 21, 20233 min read

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...

77 views

NP-C Corner: Carer Health – You’re important too

Ellie Van Velsen

Mar 19, 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...

52 views

Ellie Van Velsen

Mar 5, 20232 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...

167 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

10 Sugar-Free Recipes for Christmas Treats

ANPDF

Dec 19, 20221 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...

99 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

Intrabio Media Release | December 5, 2022

ANPDF

Dec 6, 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...

32 views

In the media: ‘How do I tell my kids they won’t grow up?’

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...

332 views

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