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Daily Archives: January 25, 2017

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Transverse Myelitis: Would You Dare to Tell Your Boss?
Source: Pexels.com

Transverse Myelitis: Would You Dare to Tell Your Boss?

  • Post author:Alisha Stone
  • Post published:January 25, 2017
  • Post category:Rare Disease/Transverse myelitis

There is an interesting article that I think the transverse myelitis (TM) Community needs to read, posted on Mobility Management. It was a real eye-opener for me – it brings…

Continue Reading Transverse Myelitis: Would You Dare to Tell Your Boss?
Midnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?
Source: Pexels.com

Midnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?

  • Post author:Erica Zahn
  • Post published:January 25, 2017
  • Post category:Non 24 hour sleep wake disorder/Rare Disease

It's time to lift a very rare condition called Non-24 Sleep-Wake Disorder, or Non-24, from the shadows so that those who are living with it can be better understood. For…

Continue Reading Midnight in the Garden of Non-24 Sleep-Wake Disorder: How Much Do You Know?
I’m Not Convinced This Doctor Was with it for Status Epilepticus
Source: Pexels.com

I’m Not Convinced This Doctor Was with it for Status Epilepticus

  • Post author:Alisha Stone
  • Post published:January 25, 2017
  • Post category:Rare Disease/Status epilepticus

Well, this is the perfect case of having too much technical, clinical information for some, but not being able to completely comprehend what’s going on--for those of us who don't have…

Continue Reading I’m Not Convinced This Doctor Was with it for Status Epilepticus
What Can 12 Million Dollars Buy? Maybe a New Treatment for CDG-la
Source: Pexels.com

What Can 12 Million Dollars Buy? Maybe a New Treatment for CDG-la

  • Post author:Erica Zahn
  • Post published:January 25, 2017
  • Post category:Rare Disease

If you, or a member of your family, is affected by a congenital disorder of glycosylation, or CDG, you are most likely familiar with the terms, definitions, and physical impact…

Continue Reading What Can 12 Million Dollars Buy? Maybe a New Treatment for CDG-la
Biopharma Company Catalyst Closes in on a Treatment for LEMS
[Source: pixabay.com]

Biopharma Company Catalyst Closes in on a Treatment for LEMS

  • Post author:Erica Zahn
  • Post published:January 25, 2017
  • Post category:Lambert-Eaton Myasthenic Syndrome/Rare Disease

Lambert-Eaton myasthenic syndrome (LEMS) is an autoimmune disorder that affects the patient's pelvic and thigh muscles, gradually weakening them. It's closely tied with small cell lung cancer because it affects…

Continue Reading Biopharma Company Catalyst Closes in on a Treatment for LEMS
La miastenia gravis palabras de lujo para decir: Tengo una enfermedad rara!

La miastenia gravis palabras de lujo para decir: Tengo una enfermedad rara!

  • Post author:Patient Worthy Contributor
  • Post published:January 25, 2017
  • Post category:Myasthenia Gravis/Rare Disease

¿Qué hicieron el magnate naviero griego Aristóteles Onassis, el actor ganador de un Oscar Sir Lawrence Olivier, y una niña de cuatro años llamada Hattie, tienen en común? Todos ellos…

Continue Reading La miastenia gravis palabras de lujo para decir: Tengo una enfermedad rara!
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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