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.
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Ellie Van Velsen
- May 8
- 4 min
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.
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Ellie Van Velsen
- Apr 8
- 3 min
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.
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Ellie Van Velsen
- Feb 8
- 2 min
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.
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Ellie Van Velsen
- Jan 8
- 3 min
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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Ellie Van Velsen
- Nov 8, 2023
- 3 min
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...
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Ellie Van Velsen
- Sep 8, 2023
- 2 min
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...
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Ellie Van Velsen
- Aug 8, 2023
- 2 min
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
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Ellie Van Velsen
- Jul 3, 2023
- 2 min
NP-C Corner: Carrier Screening - What are your chances?
Ellie explores the definitions and impacts of how Niemann-Pick disease type C is inherited.
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Ellie Van Velsen
- Apr 21, 2023
- 3 min
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...
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Ellie Van Velsen
- Mar 19, 2023
- 3 min
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...
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Ellie Van Velsen
- Mar 5, 2023
- 2 min
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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