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Daily Archives: December 7, 2016

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How Change Makes Tyrosinemia Better
[Source:: pixabay.com]

How Change Makes Tyrosinemia Better

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:Rare Disease/Tyrosinemia

Mahatma Gandhi taught that we should endeavor to be the change that we wish to see in the world. (I believe Gandhi may have been on to something). I'm wondering…

Continue Reading How Change Makes Tyrosinemia Better
21st Century Cures Act Passes Senate!

21st Century Cures Act Passes Senate!

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Rare Disease

The 21st Century Cures Act passed in the House last week but supporters have been waiting with bated breath for the verdict from the Senate. Today, it passed. In fact,…

Continue Reading 21st Century Cures Act Passes Senate!
How Support Helps You Stay Popular in the POTS World
[Source: pixabay.com]

How Support Helps You Stay Popular in the POTS World

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:POTS/Rare Disease

We all need to be able to turn to family and friends when we've got a problem. There is a strong link between the support we receive and our well-being. It…

Continue Reading How Support Helps You Stay Popular in the POTS World
The Cystic Fibrosis Taboo You Should Break
Source: pixabay.com

The Cystic Fibrosis Taboo You Should Break

  • Post author:Sabina Kennedy
  • Post published:December 7, 2016
  • Post category:Cystic Fibrosis/Rare Disease

When faced with the unexpected, we often are overwhelmed with fear about of what lies ahead. If you or a loved one have dealt with a devastating medical diagnosis, many…

Continue Reading The Cystic Fibrosis Taboo You Should Break
What Do You Know About Diet and IPF?
Source: Pexels.com

What Do You Know About Diet and IPF?

  • Post author:EmpatheticBadass
  • Post published:December 7, 2016
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

When your body has to work extra hard to breathe because of lung issues such as idiopathic pulmonary fibrosis (IPF), help it out by “eating healthy.” Digesting big, heavy meals…

Continue Reading What Do You Know About Diet and IPF?
Join This MS Mom at Athleta to Benefit The National MS Society

Join This MS Mom at Athleta to Benefit The National MS Society

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Multiple Sclerosis

Need to do some Christmas or Holiday shopping? Today, PW Contributor and super mom with MS Angie Randall is hosting an event, in-store at Athleta in Chicago, IL AND online.…

Continue Reading Join This MS Mom at Athleta to Benefit The National MS Society
Ni lo pienses Cupido

Ni lo pienses Cupido

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2016
  • Post category:Rare Disease

He estado usando los sitios de citas por Internet durante los últimos once años. También he estado tratando con una enfermedad rara y sin diagnosticar durante los últimos cinco años…

Continue Reading Ni lo pienses Cupido
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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