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This Company Just Provided a Grant for a Niemann-Pick Disease Type C Screening Program

This Company Just Provided a Grant for a Niemann-Pick Disease Type C Screening Program

According to a story from ir.stockpr.com, the biotechnology company Cyclo Therapeutics, Inc. (previously known as CTD Holdings) has recently thrown its support behind a Niemann-Pick Disease Type C newborn screening…

Continue Reading This Company Just Provided a Grant for a Niemann-Pick Disease Type C Screening Program
FDA Approves a Program for Expanded Treatment Access in Niemann-Pick Disease Type C

FDA Approves a Program for Expanded Treatment Access in Niemann-Pick Disease Type C

According to a story from ir.stockpr.com, the biotechnology company CTD Holdings, Inc., recently announced that the US Food and Drug Administration (FDA) has issued an approval for an individual Investigational…

Continue Reading FDA Approves a Program for Expanded Treatment Access in Niemann-Pick Disease Type C
The Results of This Phase 3 PKAN Clinical Trial are a Major Letdown

The Results of This Phase 3 PKAN Clinical Trial are a Major Letdown

According to a story from BioSpace, the biopharmaceutical company Retrophin, Inc., recently released the topline results from its phase 3 clinical trial. This clinical trial was testing the company's drug…

Continue Reading The Results of This Phase 3 PKAN Clinical Trial are a Major Letdown
Editor’s Choice: Listening to Rare Disease Patient Stories

Editor’s Choice: Listening to Rare Disease Patient Stories

TGIF! Something we believe is that the stories of rare disease patients are vitally important. This week, we're highlighting two articles written by patients, as well as a story about…

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The Reality of Life with a Chronic Health Condition – A Message for Those Who Don’t Understand

The Reality of Life with a Chronic Health Condition – A Message for Those Who Don’t Understand

Have you ever been judged by others for the things you do or the way you live your life? I know this is a rhetorical question because we have all…

Continue Reading The Reality of Life with a Chronic Health Condition – A Message for Those Who Don’t Understand
The Impact Stress and Emotions Have on our Health

The Impact Stress and Emotions Have on our Health

When I was 30, I developed a painful neurological movement disorder called dystonia. It totally turned my life upside down where I went from being fully functional and very active,…

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The Art of Not Caring – Reducing Stress to Improve our Health

The Art of Not Caring – Reducing Stress to Improve our Health

Having lived with chronic pain from dystonia for almost 20 years, I spent most of that time focused on treating the physical symptoms. This has been very important and helpful, but for…

Continue Reading The Art of Not Caring – Reducing Stress to Improve our Health
Glut1 Deficiency Foundation 2019 Conference Highlights!

Glut1 Deficiency Foundation 2019 Conference Highlights!

I had the pleasure of attending the Glut1 Deficiency Foundation’s 2019 Conference. While this article can't possibly do the event justice and encompass all it had to offer, we will…

Continue Reading Glut1 Deficiency Foundation 2019 Conference Highlights!
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Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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