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Daily Archives: October 17, 2016

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Size Matters Not When it Comes to Huntington’s Research

Size Matters Not When it Comes to Huntington’s Research

  • Post author:Ronald Ledsen
  • Post published:October 17, 2016
  • Post category:Huntington's disease/Rare Disease

We’ve written before about the frankly awful Huntington’s disease. The devastating way it strips a person of their motor functions, cognition, and day-to-day quality of life. Treatments remain relatively scarce…

Continue Reading Size Matters Not When it Comes to Huntington’s Research
This is It! Myasthenia Gravis Helpful Resources Depot

This is It! Myasthenia Gravis Helpful Resources Depot

  • Post author:Sabina Kennedy
  • Post published:October 17, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Have you found a comprehensive resource for living with myasthenia gravis (MG)? This is the website you need. From the first click, the Myasthenia Gravis Foundation of America (MGFA) webpage…

Continue Reading This is It! Myasthenia Gravis Helpful Resources Depot
Why You Should Care About World Rare Disease Day 2017
Source: pexels.com

Why You Should Care About World Rare Disease Day 2017

  • Post author:Erica Zahn
  • Post published:October 17, 2016
  • Post category:Rare Disease

"Fate whispers to the Warrior, 'You are not strong enough to withstand the storm.' The Warrior whispers back, 'I am the storm.'" World Rare Disease Day is observed each year…

Continue Reading Why You Should Care About World Rare Disease Day 2017
One Amazing Woman, One Amazing Video: See Her Cushing’s Journey
Source: pexels.com

One Amazing Woman, One Amazing Video: See Her Cushing’s Journey

  • Post author:Erica Zahn
  • Post published:October 17, 2016
  • Post category:Cushing Disease/Rare Disease

DaVita Garfield was a young mother with a great job, a strong faith, and was living a happy life when her health began to fail. She had a number of…

Continue Reading One Amazing Woman, One Amazing Video: See Her Cushing’s Journey
If Your Newborn Has CINCA, Then You Need to Read This
Source: pixabay.com

If Your Newborn Has CINCA, Then You Need to Read This

  • Post author:Ellen Johnson
  • Post published:October 17, 2016
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

According to a study published in Pediatric Rheumatology, treatment with anakinra early in the neonatal period (birth-28 days) was shown to be effective in treating CINCA (Chronic Infantile Neurological Cutaneous…

Continue Reading If Your Newborn Has CINCA, Then You Need to Read This
How to Change Your Dystonia Game with DBS
Pixabay

How to Change Your Dystonia Game with DBS

  • Post author:Sabina Kennedy
  • Post published:October 17, 2016
  • Post category:Dystonia/Rare Disease

Playing games with your mind? That's exactly what experts believe you should do to stimulate your brain and stay sharp, no matter how old you are. You might be surprised…

Continue Reading How to Change Your Dystonia Game with DBS
The Amazing Support from Her Viewers Astonished Reporter with Churg-Strauss
[source: pixabay.com]

The Amazing Support from Her Viewers Astonished Reporter with Churg-Strauss

  • Post author:Erica Zahn
  • Post published:October 17, 2016
  • Post category:Churg-Strauss Syndrome/Rare Disease

Popular New Zealand news anchor Toni Street announced to fans she has Churg-Strauss syndrome. Toni didn't want to kick up a fuss about her diagnosis with the autoimmune disease. Her viewership…

Continue Reading The Amazing Support from Her Viewers Astonished Reporter with Churg-Strauss
Descubre por qué este mensaje sobre la distonia es tan importante

Descubre por qué este mensaje sobre la distonia es tan importante

  • Post author:Patient Worthy Contributor
  • Post published:October 17, 2016
  • Post category:Dystonia/Rare Disease

  Conozca a Brittany! Brittany estaba desanimado después de ir a un restaurante y tener la camarera ignoran por completo de ella cuando la distonía hace que le sea difícil…

Continue Reading Descubre por qué este mensaje sobre la distonia es tan importante
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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