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Daily Archives: September 5, 2017

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This Guide is a Must-Have for Down Syndrome Caregivers!
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This Guide is a Must-Have for Down Syndrome Caregivers!

  • Post author:Sarah Lau
  • Post published:September 5, 2017
  • Post category:Down Syndrome/Rare Disease

Most people do not enjoy going to the dentist, but for patients with down syndrome, this normal task is even more of an ordeal. Patients often have a difficult time…

Continue Reading This Guide is a Must-Have for Down Syndrome Caregivers!
Living Well: Myasthenia Gravis Can’t Stop the Travel Bug
[Source: pixabay.com]

Living Well: Myasthenia Gravis Can’t Stop the Travel Bug

  • Post author:Sabina Kennedy
  • Post published:September 5, 2017
  • Post category:Myasthenia Gravis/Rare Disease

If you are living with myasthenia gravis (MG) or any other rare disease or medical condition, you may have the travel bug, and travel insurance may be worth the investigation. Let’s…

Continue Reading Living Well: Myasthenia Gravis Can’t Stop the Travel Bug
The Ugly Stigma Surrounding Narcolepsy
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The Ugly Stigma Surrounding Narcolepsy

  • Post author:Sabina Kennedy
  • Post published:September 5, 2017
  • Post category:Narcolepsy/Rare Disease

When you need help with a problem, where do you turn? Many people these days turn immediately to the internet. From Googling to settle a bet to researching a doctoral…

Continue Reading The Ugly Stigma Surrounding Narcolepsy
An ARESTing Development in Cystic Fibrosis Research
[Source: pixabay.com]

An ARESTing Development in Cystic Fibrosis Research

  • Post author:Minden Cantrell
  • Post published:September 5, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Exciting research is happening right now that could help thousands of children around the world with cystic fibrosis (CF). A group of scientists and researchers in Australia are determined to…

Continue Reading An ARESTing Development in Cystic Fibrosis Research
You May Be Able to Avoid That Routine Colonoscopy
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You May Be Able to Avoid That Routine Colonoscopy

  • Post author:Sarah Lau
  • Post published:September 5, 2017
  • Post category:Rare Disease/ulcerative Colitis

An easier diagnosis may be coming for ulcerative colitis patients, as researchers at Georgia State University recently used a special type of spectroscopy to examine the blood serum of mice…

Continue Reading You May Be Able to Avoid That Routine Colonoscopy
Announcement from the Child Neurology Foundation

Announcement from the Child Neurology Foundation

  • Post author:Patient Worthy Contributor
  • Post published:September 5, 2017
  • Post category:Epilespy/Lennox-Gastaut syndrome/Rare Disease

On behalf of the CNF: Applications for the 2017 Harnett Mini-Grant: Now Being Accepted In January 2014, the Harnett Mini-Grant was founded by Mr. Michael Harnett, as an enduring memorial…

Continue Reading Announcement from the Child Neurology Foundation
My Rare Diseases May Not Kill Me, But Sometimes It Feels Like They Will
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My Rare Diseases May Not Kill Me, But Sometimes It Feels Like They Will

  • Post author:Patient Worthy Contributor
  • Post published:September 5, 2017
  • Post category:Dysautonomia/Lyme Disease/POTS/Rare Disease

When I was undergoing a tough treatment and reeling from the death of my God-sister, I was definitely down in the dumps. I couldn't really walk and I was hooked…

Continue Reading My Rare Diseases May Not Kill Me, But Sometimes It Feels Like They Will

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