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Daily Archives: June 28, 2016

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aprende a ser valiente como esta milenaria inspiradora con AEH

aprende a ser valiente como esta milenaria inspiradora con AEH

  • Post author:Patient Worthy Contributor
  • Post published:June 28, 2016
  • Post category:HAE/Rare Disease

Amanda luchó durante años para comprender el dolor y la hinchazón que se mantuvo experimentar. Sus médicos no podía entender era incorrecto y que nunca supo por qué la garganta…

Continue Reading aprende a ser valiente como esta milenaria inspiradora con AEH
Grave Muscular Weakness

Grave Muscular Weakness

  • Post author:Kristen Lord
  • Post published:June 28, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Myasthenia gravis comes from Greek and Latin words meaning grave muscular weakness. It is a is a chronic autoimmune neuromuscular disease defined by fluctuating weakness in the voluntary muscles. It effects…

Continue Reading Grave Muscular Weakness
New Hope for People Who Have IPF

New Hope for People Who Have IPF

  • Post author:EmpatheticBadass
  • Post published:June 28, 2016
  • Post category:IPF/Rare Disease

“I can’t even remember the name of that new drug Jo used,” my cousin told me, “but it did help improve the time she had left.” Jo was one of…

Continue Reading New Hope for People Who Have IPF
It’s not Cheap to be Chronically Ill

It’s not Cheap to be Chronically Ill

  • Post author:Rebekah
  • Post published:June 28, 2016
  • Post category:Rare Disease

Not only is a chronic illness always hanging over your head because of it's cost to your health, your social life, and overall well-being, most times it also takes it's…

Continue Reading It’s not Cheap to be Chronically Ill
The Really Amazing World of Human Genomes Will Stop Misdiagnosis
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The Really Amazing World of Human Genomes Will Stop Misdiagnosis

  • Post author:Erica Zahn
  • Post published:June 28, 2016
  • Post category:GLUT1 DS/Rare Disease

In every great mystery novel, there's a code that needs to be cracked so the protagonist can triumph in the end. When it comes to medicine, that code is the…

Continue Reading The Really Amazing World of Human Genomes Will Stop Misdiagnosis
Dysautonomia Really Puts a Drag on Your Day
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Dysautonomia Really Puts a Drag on Your Day

  • Post author:Erica Zahn
  • Post published:June 28, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

In order to learn about something new, I need to know what the words describing the illness mean. If you look at the word "dysautonomia," and have never run across…

Continue Reading Dysautonomia Really Puts a Drag on Your Day
This Amazing Little Boy Smiles in the Face of PH
Pixabay

This Amazing Little Boy Smiles in the Face of PH

  • Post author:Erica Zahn
  • Post published:June 28, 2016
  • Post category:pulmonary arterial hypertension/Rare Disease

On June 23, 201, a little boy named Jackson was born. He weighed in at a healthy seven pounds, three ounces, and was 20.5 inches long, and his parents were…

Continue Reading This Amazing Little Boy Smiles in the Face of PH

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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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