NP-C Corner | ANPDF

Influenced by her cousin's diagnosis of Niemann-Pick disease type C, follow Ellie in her journey to explore all things "Niemann-Pick".

Mar 5, 2023

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...

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5 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...

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.

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!

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.

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.

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.

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.

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.

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