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Daily Archives: June 14, 2016

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Diabetes Drug is Gaining Traction in the CGD World

Diabetes Drug is Gaining Traction in the CGD World

  • Post author:PW Blogger
  • Post published:June 14, 2016
  • Post category:Primary Immunodeficiencies/Rare Disease

The diabetes drug pioglitazone, has an unexpected side effect that brings hope to patients with chronic granulomatous disease (CGD) and other primary immunodeficiency diseases. This drug boosts the production of ROS in…

Continue Reading Diabetes Drug is Gaining Traction in the CGD World
Five Years Longer: Men’s Health Week

Five Years Longer: Men’s Health Week

  • Post author:Kristen Lord
  • Post published:June 14, 2016
  • Post category:Rare Disease

On average, women live five years longer than men. Of course we want to spend as many days possible with the men in our lives. June 13th - June 19th…

Continue Reading Five Years Longer: Men’s Health Week
It’s Heartbreaking When a Baby Has Myasthenia Gravis
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It’s Heartbreaking When a Baby Has Myasthenia Gravis

  • Post author:PW Blogger
  • Post published:June 14, 2016
  • Post category:Myasthenia Gravis/Rare Disease

The last thing any parent wants to hear is that their infant or child has been diagnosed with congenital myasthenia gravis, a disease that causes various degrees of weakness in the…

Continue Reading It’s Heartbreaking When a Baby Has Myasthenia Gravis
Tell The World About You Rare Dads

Tell The World About You Rare Dads

  • Post author:Kristen Lord
  • Post published:June 14, 2016
  • Post category:Rare Disease

Fathers often seem to have the great knack for good story telling. Growing up I always wanted a story from my father. This Father's Day, the world should hear the life…

Continue Reading Tell The World About You Rare Dads
My Dystonia Fashion Statement

My Dystonia Fashion Statement

  • Post author:Patient Worthy Contributor
  • Post published:June 14, 2016
  • Post category:Dystonia

What do you never leave home without? Is it a purse? Your wallet? Keys? Yeah, I have all of those things too. But September through May, and dozens of other…

Continue Reading My Dystonia Fashion Statement
What This Dad With Parkinson’s Is Doing Will Make You Cry

What This Dad With Parkinson’s Is Doing Will Make You Cry

  • Post author:PW Blogger
  • Post published:June 14, 2016
  • Post category:Parkinson's Disease/Rare Disease

Anyone with Parkinson's disease or with a family member who has the disease knows that it can be heartbreaking at times. There are good days and bad days, but the sacrifices that have to…

Continue Reading What This Dad With Parkinson’s Is Doing Will Make You Cry
10 Struggles All Twentysomethings With a Rare Disease Know
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10 Struggles All Twentysomethings With a Rare Disease Know

  • Post author:Farrah Fontaine
  • Post published:June 14, 2016
  • Post category:Rare Disease

Hitting up the club? Try hitting up the couch. That’s the reality of life with a rare disease. Forget marathons, Grey Goose, and stilettos. Your life is now Netflix, antacids,…

Continue Reading 10 Struggles All Twentysomethings With a Rare Disease Know
A Pesar de mi espondilitis anquilosante, puedo tener un bebé sano
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A Pesar de mi espondilitis anquilosante, puedo tener un bebé sano

  • Post author:Patient Worthy Contributor
  • Post published:June 14, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Si usted está considerando el embarazo, mientras gestionas tu espondilitis anquilosante, es posible que tenga muchas preguntas, tales como ¿Va a tener el dolor de espalda típico que las mujeres…

Continue Reading A Pesar de mi espondilitis anquilosante, puedo tener un bebé sano

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