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Daily Archives: March 16, 2017

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Is NIH Funding in Trouble?
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Is NIH Funding in Trouble?

  • Post author:Patient Worthy Contributor
  • Post published:March 16, 2017
  • Post category:Dysautonomia/POTS/Rare Disease

After lobbying during Rare Disease Week on Capitol Hill a couple of weeks ago, I was convinced we were pretty successful with our congresspersons in showing them how vital NIH…

Continue Reading Is NIH Funding in Trouble?
DMD Drug Sold After Pricing Problems for Pharma Company
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DMD Drug Sold After Pricing Problems for Pharma Company

  • Post author:Patient Worthy Contributor
  • Post published:March 16, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

I recently covered an author who had some solid advice for drug makers in regards to the rare disease pricing problem. The following drug maker may or may not have…

Continue Reading DMD Drug Sold After Pricing Problems for Pharma Company
Be On the Lookout for Lyme Disease and Its Many Disguises
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Be On the Lookout for Lyme Disease and Its Many Disguises

  • Post author:Erica Zahn
  • Post published:March 16, 2017
  • Post category:Lyme Disease/Rare Disease

Ladies and gentlemen, it's that time of year again, when I put on my superhero cape, I ascend to the top of the highest mountain, and at the top of…

Continue Reading Be On the Lookout for Lyme Disease and Its Many Disguises
Are You Unknowingly Exploiting Kids with Rare Disease?
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Are You Unknowingly Exploiting Kids with Rare Disease?

  • Post author:Patient Worthy Contributor
  • Post published:March 16, 2017
  • Post category:Rare Disease

Imagine, three to 10 months with your new born baby in a Neonatal Intensive Care Unit (NICU) born with a potentially mortal disease or defect. You’ve battled through surgeries, recoveries,…

Continue Reading Are You Unknowingly Exploiting Kids with Rare Disease?
What You Need to Know About Wilson Disease
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What You Need to Know About Wilson Disease

  • Post author:Al Pendleton
  • Post published:March 16, 2017
  • Post category:Wilson Disease

The liver is a pretty important organ. Some people think of it as the place where alcohol goes. Your neighbor’s kid in the 6th grade will tell you that it…

Continue Reading What You Need to Know About Wilson Disease
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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