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Daily Archives: September 14, 2016

Home » Archives for September 14, 2016
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

OF INTEREST


skintones


“Shades of Psoriasis”: Plaque Psoriasis and Sharing Your Story


Picture of the family


Lila’s Journey: Staying Positive While Living With Pediatric Low-Grade Glioma (pLGG)

DIVERSE VOICES


RSV Vial


Understanding RSV: Why Combatting Ethnic and Age-Related Health Disparities Could Improve Outcomes


Hands Supporting Each Other


We Need Equity and Diversity Within Rare Disease Research


Image of people


DNA in Color: How Ronya Nelson is Working to Close the Diversity Gap in Genetics - Part 1


Picture of a crowd


Bridging the Diversity Gap in Healthcare


Congratulations


Congratulations to the 2023 Recipients of the Diversity in Lupus Research Awards!

Patient Stories

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

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RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

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