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Daily Archives: November 16, 2016

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When Should You Not Take This Medicine as Prescribed?
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When Should You Not Take This Medicine as Prescribed?

  • Post author:PW Blogger
  • Post published:November 16, 2016
  • Post category:Cystic Fibrosis/Rare Disease

When an arthritis medication can bring hope to so many more... Cystic fibrosis is a disease that affects the respiratory system and also the gastrointestinal system. There are 2 certain inflammasomes, called…

Continue Reading When Should You Not Take This Medicine as Prescribed?
How to Stay Strong When You Have EDS
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How to Stay Strong When You Have EDS

  • Post author:PW Blogger
  • Post published:November 16, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

How would you respond if your body did not work for you but against you? What if you felt that your body was actually your enemy? For people with Ehlers-Danlos…

Continue Reading How to Stay Strong When You Have EDS
Fabry Disease: Three Cheers for Unrelenting Scientists Fighting for a Cure
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Fabry Disease: Three Cheers for Unrelenting Scientists Fighting for a Cure

  • Post author:Alisha Stone
  • Post published:November 16, 2016
  • Post category:Fabry Disease/Rare Disease

I read a report recently from the New England Journal of Medicine about a clinical trial and thought I’d share it with you because it’s about Fabry disease, a genetic disease…

Continue Reading Fabry Disease: Three Cheers for Unrelenting Scientists Fighting for a Cure
Remarkable Ketogenic Diet is Hailed Tremendous by Mom
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Remarkable Ketogenic Diet is Hailed Tremendous by Mom

  • Post author:Alisha Stone
  • Post published:November 16, 2016
  • Post category:Epilespy/GLUT1 DS

My heart breaks for children who are suffering from a chronic or rare disease such as refractory epilepsy or Glut1 disease. My heart breaks as well for their parents, siblings, and grandparents…

Continue Reading Remarkable Ketogenic Diet is Hailed Tremendous by Mom
What Can This Stunning Musician Show You About Parkinson’s?
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What Can This Stunning Musician Show You About Parkinson’s?

  • Post author:Erica Zahn
  • Post published:November 16, 2016
  • Post category:Multiple system atrophy (MSA)/Parkinson's Disease/Rare Disease

When I hear the word Parkinson's, the first image that comes to mind is a long-haired guitar player on stage, captivating the hundreds of people who'd come to hear his…

Continue Reading What Can This Stunning Musician Show You About Parkinson’s?
Wanted: More Brilliant Professors to Dumb Down Hemophilia
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Wanted: More Brilliant Professors to Dumb Down Hemophilia

  • Post author:Alisha Stone
  • Post published:November 16, 2016
  • Post category:Hemophilia A/Hemophilia B/Rare Disease

Shocker! Did you know it’s possible to acquire hemophilia? There’s a professor who I’m obsessed with from Texas—that would be “obsessed” as in a healthy obsession! And here’s why: He…

Continue Reading Wanted: More Brilliant Professors to Dumb Down Hemophilia
Are You Embarrassed by Your Narcolepsy? Don’t Be!
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Are You Embarrassed by Your Narcolepsy? Don’t Be!

  • Post author:Sabina Kennedy
  • Post published:November 16, 2016
  • Post category:Narcolepsy/Rare Disease

Do you remember your first job interview? I sure do, and it was an experience to remember for sure. Being a recent college graduate, I had attended professional seminars on:…

Continue Reading Are You Embarrassed by Your Narcolepsy? Don’t Be!
8 Behçet’s Disease Facts You Need to Know
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8 Behçet’s Disease Facts You Need to Know

  • Post author:Patient Worthy Contributor
  • Post published:November 16, 2016
  • Post category:Behçet's/Rare Disease

Si usted tiene un amigo o miembro de la familia que recientemente fue diagnosticado con la enfermedad de Behçet, es el momento de educar acerca de la enfermedad, porque cuanto…

Continue Reading 8 Behçet’s Disease Facts You Need to Know

Featured


Picture of Family


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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