NPC Corner | ANPDF

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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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Ellie Van Velsen

6 days ago2 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...

49 views

NP-C Corner: Unpacking the Blood-Brain Barrier – A Key to NPC Treatment

Ellie Van Velsen

Nov 83 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.

69 views

NP-C Corner: Genetic Counselling and NPC

Dave Badcock

Oct 82 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!

19 views

Ellie Van Velsen

Aug 12 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.

30 views

Ellie Van Velsen

May 84 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

NP-C Corner: Losing the ability to eat safely

Ellie Van Velsen

Apr 83 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

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

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

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

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

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

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