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Daily Archives: September 14, 2016

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Myasthenia Gravis: Looking for Recognition of the Fight
[Source: pixabay.com]

Myasthenia Gravis: Looking for Recognition of the Fight

  • Post author:Patient Worthy Contributor
  • Post published:September 14, 2016
  • Post category:Myasthenia Gravis

If you see some one with a bandage or a cast, you wouldn't question the injury. If someone tells you they have cancer, you wouldn't judge the bad days. People,…

Continue Reading Myasthenia Gravis: Looking for Recognition of the Fight
Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene
Pixabay

Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene

  • Post author:Erica Zahn
  • Post published:September 14, 2016
  • Post category:CAPS/FCAS/Rare Disease

Familial cold autoinflammatory syndrome (FCAS) is an extremely rare disorder. It's characterized by episodes of joint pain, fever, and other symptoms of inflammation. All of these symptoms are triggered by…

Continue Reading Familial Cold Autoinflammatory Syndrome (FCAS): CAPS NLRP3 Gene
One Brave Doctor’s Personal Battle with Mycosis Fungoides
Source: www.pixabay.com

One Brave Doctor’s Personal Battle with Mycosis Fungoides

  • Post author:Erica Zahn
  • Post published:September 14, 2016
  • Post category:mycosis fungoides/Rare Disease

Dr. Paul Raffer was a neurologist who practiced medicine until he got sick with mycosis fungoides. His symptoms began on his skin, and after consulting with a colleague, he was immediately…

Continue Reading One Brave Doctor’s Personal Battle with Mycosis Fungoides
Don’t Just Complain About Amyloidosis, Do Something About It
Source: Pixabay

Don’t Just Complain About Amyloidosis, Do Something About It

  • Post author:James Ernest Cassady
  • Post published:September 14, 2016
  • Post category:Amyloidosis/Rare Disease/Timely

On Saturday, 29 October, 2016, the Adam Gardiner Fund will host Come Racing at Rosehill Gardens in Randwick, Australia. The event, like everything the AGF does, is intended to raise funds to…

Continue Reading Don’t Just Complain About Amyloidosis, Do Something About It
Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica

Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica

  • Post author:Patient Worthy Contributor
  • Post published:September 14, 2016
  • Post category:GLUT1 DS/Rare Disease

La mayoría de los padres están ansiosos de que las primeras palabras de su hijo. Pero como el Daily Mail en el Reino Unido informa, Stevie y David Taylor esperaron…

Continue Reading Usted nunca va a adivinar cómo ser cursi le salva la vida a esta chica

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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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