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A Remarkable Surgery Gives Hope for Babies with Spina Bifida

A Remarkable Surgery Gives Hope for Babies with Spina Bifida

By Rachel Whetstone from In The Cloud Copy When Helisabed Romano was pregnant with her daughter, she got some bad news. The the developing baby had spina bifida, a defect…

Continue Reading A Remarkable Surgery Gives Hope for Babies with Spina Bifida
The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 2

The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 2

This is part two of the story, click here to read part one   After searching for a new neurologist, we found one only 30 mins away that was willing…

Continue Reading The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 2
ICYMI: Newcastle Scientists Identify a Gene that Plays a role in Joubert Syndrome

ICYMI: Newcastle Scientists Identify a Gene that Plays a role in Joubert Syndrome

  According to a recent article in the UK Newcastle Chronicle, when doctors gave Leanne Buckley an opportunity to terminate both her pregnancies, Leanne and her husband Michael were emphatic…

Continue Reading ICYMI: Newcastle Scientists Identify a Gene that Plays a role in Joubert Syndrome
The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 1

The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 1

I want to start off by saying that the intention behind my words are not to convey or express any sort of anger, hatred, or resentment. I am choosing to…

Continue Reading The Sleepy Road to Diagnosis and Deprivation: A Narcolepsy Patient Story, Part 1
Could This Experimental Drug Treat Extreme Hunger in Prader-Willi Syndrome?

Could This Experimental Drug Treat Extreme Hunger in Prader-Willi Syndrome?

According to a story from labblog.uofmhealth.org, one of the defining features of Prader-Willi syndrome, a rare disorder, is hyperphagia, which is extreme overeating and obsession with food. While this is…

Continue Reading Could This Experimental Drug Treat Extreme Hunger in Prader-Willi Syndrome?
A New Clinical Trial is Underway for Pancreatic Cancer

A New Clinical Trial is Underway for Pancreatic Cancer

The Study: MRx0518-I-003 MRx0518-I-003 is a trial investigating MRx0518 as part of a combination treatment for pancreatic cancer, used with preoperative radiotherapy. The trial will evaluate the therapies safety and…

Continue Reading A New Clinical Trial is Underway for Pancreatic Cancer
Huntington’s Disease Patients Place Hopes in Clinical Trial

Huntington’s Disease Patients Place Hopes in Clinical Trial

According to a story from the University of Aberdeen, 57 year old Sandy Patience of Inverness, Scotland, is one of a total of 801 Huntington's disease patients from around the…

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HCU isn’t an allergy: Jessica’s Homocystinuria Story

HCU isn’t an allergy: Jessica’s Homocystinuria Story

When Jessica Karnes was a kid, she was told she was no longer allowed to eat chicken nuggets. As a self-proclaimed lifelong picky eater—and a four-and-a-half-year-old at the time—this was a…

Continue Reading HCU isn’t an allergy: Jessica’s Homocystinuria Story
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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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