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Daily Archives: September 17, 2015

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This Little Girl’s Plea for Cake Will Make You Throw on an Apron
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This Little Girl’s Plea for Cake Will Make You Throw on an Apron

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:GLUT1 DS/Rare Disease

As a young girl, Remi Savioz wanted one thing. And no, it wasn’t a puppy, a bike, or even a trip to Disneyland… What Remi wanted was a GLUT1 DS…

Continue Reading This Little Girl’s Plea for Cake Will Make You Throw on an Apron
Are You Ready for this Truth About an Ankylosing Spondylitis Cure?

Are You Ready for this Truth About an Ankylosing Spondylitis Cure?

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:Ankylosing Spondylitis

We hate to be the bearer of bad news, but according to media outlet, Newswise, a rather unfortunate truth has been recently brought to light, revealing that people with spinal arthritis have…

Continue Reading Are You Ready for this Truth About an Ankylosing Spondylitis Cure?
What Your Mother Never Told You About PI Treatment Options
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What Your Mother Never Told You About PI Treatment Options

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:CVID/Primary Immunodeficiencies/Rare Disease

C’mon needlephobes—you know who you are! Every family has one—and it’s okay. Breathe… Whether or not you or your loved one is a die-hard needlephobe, you’re probably not reading this…

Continue Reading What Your Mother Never Told You About PI Treatment Options
Get Clued in on CAPS, 3 Helpful Pieces of Information

Get Clued in on CAPS, 3 Helpful Pieces of Information

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:CAPS/Rare Disease

Ever heard of CAPS? It’s not a hat or a Washington D.C. based hockey team; it’s a group of rare, inherited autoinflammatory diseases. CAPS, short for Cryopyrin-Associated Periodic Syndromes, is…

Continue Reading Get Clued in on CAPS, 3 Helpful Pieces of Information
This is When a Second Opinion Could Save Your Life

This is When a Second Opinion Could Save Your Life

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:Familial Hypercholesterolemia/Homozygous Familial Hypercholesterolemia/Rare Disease

Little Avery’s family has had to make some major changes ever since Avery was diagnosed with Familial Hypercholesterolemia (HoFH) in December 2014. As discussed in the blog, Avery's Fight, doctors…

Continue Reading This is When a Second Opinion Could Save Your Life
Should This Doctor’s Big Brains Be Insured?

Should This Doctor’s Big Brains Be Insured?

  • Post author:Patient Worthy Contributor
  • Post published:September 17, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

If you or your loved one has been diagnosed with ankylosing spondylitis (AS), here’s the latest down and dirty news from a clinical trial that matters—cause nobody wants to read…

Continue Reading Should This Doctor’s Big Brains Be Insured?

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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


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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