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Daily Archives: August 30, 2016

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How To Find the Truth Behind Her Death in the Hospital
Pixabay

How To Find the Truth Behind Her Death in the Hospital

  • Post author:Kiki Jones
  • Post published:August 30, 2016
  • Post category:Myasthenia Gravis/Rare Disease

On June 1, 2011, a patient diagnosed with myasthenia gravis (MG) died after falling in Wellington Regional Hospital in New Zealand. Those are the basic facts, but behind this tragedy…

Continue Reading How To Find the Truth Behind Her Death in the Hospital
If You Have FMF, You Need To Thank This Man

If You Have FMF, You Need To Thank This Man

  • Post author:Farrah Fontaine
  • Post published:August 30, 2016
  • Post category:Autoinflammatory Disease/Familial Mediterranean Fever/Rare Disease

One of the most frustrating parts of having a rare disease is getting the dang diagnosis in the first place. We've all heard the garbage excuses before: "It's all in…

Continue Reading If You Have FMF, You Need To Thank This Man
Meme: Enjoy the Day’s Gifts

Meme: Enjoy the Day’s Gifts

  • Post author:Rebekah
  • Post published:August 30, 2016
  • Post category:Rare Disease

There's no doubt that living with a chronic illness is difficult. There may be certain things you can't do and activities you can enjoy. Even so, if you let that…

Continue Reading Meme: Enjoy the Day’s Gifts
What Unexpected Treatment Is Growing Support?
Pixabay

What Unexpected Treatment Is Growing Support?

  • Post author:Ronald Ledsen
  • Post published:August 30, 2016
  • Post category:Lennox-Gastaut syndrome/Rare Disease

Few topics in medicine are as fraught with controversy as medical marijuana. Decades of debate over the harmful effects of recreational marijuana use—to mention nothing of its depiction in popular…

Continue Reading What Unexpected Treatment Is Growing Support?
Little Babies with Big Breathing Problems: What Is BPD?
Free-Photos / Pixabay

Little Babies with Big Breathing Problems: What Is BPD?

  • Post author:Erica Zahn
  • Post published:August 30, 2016
  • Post category:Bronchopulmonary Dysplasia/Rare Disease

Bronchopulmonary dysplasia (BPD) is a condition that mainly affects premature infants who have very low birth-weight (under 2.2 pounds). Because the baby's lung tissue is underdeveloped, respiratory distress can result,…

Continue Reading Little Babies with Big Breathing Problems: What Is BPD?
Vas a querer saber lo que este científico encontro sobre el AEH
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Vas a querer saber lo que este científico encontro sobre el AEH

  • Post author:Patient Worthy Contributor
  • Post published:August 30, 2016
  • Post category:HAE/Rare Disease

El angioedema hereditario, o AEH, es una rara enfermedad genética que es potencialmente mortal con un muchas preguntas sin respuesta aún. Sin embargo, los científicos del Instituto Karolinska en Suecia,…

Continue Reading Vas a querer saber lo que este científico encontro sobre el AEH
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
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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