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Daily Archives: December 27, 2016

Home » Archives for December 27, 2016
Are You Riding on That New Liver Train? Get Tested!
Source: Pexels.com

Are You Riding on That New Liver Train? Get Tested!

  • Post author:Erica Zahn
  • Post published:December 27, 2016
  • Post category:Nonalcoholic steatohepatitis/Rare Disease

Did you know there are more than 100 different types of liver disease? Also, that the liver is the second largest organ in the body? Both are true. Most people…

Continue Reading Are You Riding on That New Liver Train? Get Tested!
Why No One Talks About Firing Their Doctor Anymore
Source: Pixabay.com

Why No One Talks About Firing Their Doctor Anymore

  • Post author:Sabina Kennedy
  • Post published:December 27, 2016
  • Post category:Primary sclerosing cholangitis/Rare Disease

I can still remember the day when my overt trust in my doctor put my own health at risk. The ideal doctor and patient relationship never really developed. In retrospect,…

Continue Reading Why No One Talks About Firing Their Doctor Anymore
New CRN Cystinosis Comic Series is in a League of Its Own

New CRN Cystinosis Comic Series is in a League of Its Own

  • Post author:Kiki Jones
  • Post published:December 27, 2016
  • Post category:Cystinosis/Rare Disease/Timely

On the phone, Katie Larimore of the Cystinosis Research Network (CRN) sounds like the happiest parts of a country song—she’s friendly, passionate, and prone to affectionate names like “honey.” She…

Continue Reading New CRN Cystinosis Comic Series is in a League of Its Own
You’re Not Alone! Here are Some Lennox-Gastaut Syndrome Resources
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You’re Not Alone! Here are Some Lennox-Gastaut Syndrome Resources

  • Post author:Erica Zahn
  • Post published:December 27, 2016
  • Post category:Lennox-Gastaut syndrome/Rare Disease

There is a man in my church whose 12 year old daughter has Lennox-Gastaut syndrome (LGS). If you're not familiar with this particular form of epilepsy, let me just say…

Continue Reading You’re Not Alone! Here are Some Lennox-Gastaut Syndrome Resources
The Neverending Story of Freidrich Ataxia and Where to Find Help
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The Neverending Story of Freidrich Ataxia and Where to Find Help

  • Post author:Erica Zahn
  • Post published:December 27, 2016
  • Post category:Friedreich ataxia/Rare Disease

Before we take a look at a rare disease called Freidrich ataxia, or FA, let's first understand the meaning of the word "ataxia." Ataxia includes loss or lack of muscle…

Continue Reading The Neverending Story of Freidrich Ataxia and Where to Find Help
¿Qué harías con 180 minutos?

¿Qué harías con 180 minutos?

  • Post author:Patient Worthy Contributor
  • Post published:December 27, 2016
  • Post category:Cystic Fibrosis

¿Qué se hace con 180 minutos? Piense en esto por sólo 1 minuto ... Ahora, dedique 1 minuto más viendo el vídeo a continuación. Para los cerca de 30.000 personas…

Continue Reading ¿Qué harías con 180 minutos?

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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