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Daily Archives: November 23, 2016

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Tourette’s Syndrome: The Truth About Curbing Your Enthusiasm
Source: www.pixabay.com

Tourette’s Syndrome: The Truth About Curbing Your Enthusiasm

  • Post author:Alisha Stone
  • Post published:November 23, 2016
  • Post category:Rare Disease/Tourette syndrome

Let's take a stroll down memory lane to gain some perspective on Tourette’s syndrome… Years ago, when the famed comedian and director, Larry David, produced an episode of Curb Your Enthusiasm, which…

Continue Reading Tourette’s Syndrome: The Truth About Curbing Your Enthusiasm
Do You Know What ACDMPV Is? Find Out Now!

Do You Know What ACDMPV Is? Find Out Now!

  • Post author:EmpatheticBadass
  • Post published:November 23, 2016
  • Post category:Alveolar capillary dysplasia/Rare Disease

The human body is an amazing system, when you really stop to think about it. Just taking a breath takes millions of processes—from chemical reactions to mechanical activities and more—working…

Continue Reading Do You Know What ACDMPV Is? Find Out Now!
FOP Webinar Nov 30th!
Pixabay

FOP Webinar Nov 30th!

  • Post author:Rebekah
  • Post published:November 23, 2016
  • Post category:Fibrodysplasia Ossificans Progressiva (FOP)/Timely

Cancer may have been called the Emperor of all Maladies but FOP-Fibrodysplasia Ossificans Progressiva is certainly the King. We place it lower only because it affects so few; one in every…

Continue Reading FOP Webinar Nov 30th!
You’ll be Astonished at How Different Napping is from Narcolepsy
[Source: pixabay.com]

You’ll be Astonished at How Different Napping is from Narcolepsy

  • Post author:Erica Zahn
  • Post published:November 23, 2016
  • Post category:Narcolepsy/Rare Disease

I was sitting across the table from my biology study partner on a Saturday afternoon, when I noticed he was awfully quiet all of a sudden. I looked up from…

Continue Reading You’ll be Astonished at How Different Napping is from Narcolepsy
Simple Hand Turkeys

Simple Hand Turkeys

  • Post author:Kristen Lord
  • Post published:November 23, 2016
  • Post category:Rare Disease

Ah, I remember the simple times, when all you had to worry about was tracing your hand with a crayon and color in a turkey. Now I am an adult…

Continue Reading Simple Hand Turkeys
When a Tumor Turns to Cancer: Here’s What You Need to Know
Source: pixabay.com

When a Tumor Turns to Cancer: Here’s What You Need to Know

  • Post author:Erica Zahn
  • Post published:November 23, 2016
  • Post category:Carcinoid Syndrome/Rare Disease

Carcinoid tumors are very rare tumors that develop slowly in the digestive tract or in the lungs. In its early stages, there are no symptoms, but as the tumor gets…

Continue Reading When a Tumor Turns to Cancer: Here’s What You Need to Know
What Can the Tourette Association of America Offer You?
Source: flickr.com

What Can the Tourette Association of America Offer You?

  • Post author:Ronald Ledsen
  • Post published:November 23, 2016
  • Post category:Rare Disease/Tourette syndrome

Given how Tourette Syndrome is so wildly misunderstood, you’d be forgiven for thinking that it’s an ultra-rare disease, and that people living with it are as elusive as a Bigfoot.…

Continue Reading What Can the Tourette Association of America Offer You?
Open Your Heart to This Beautiful Gaucher Story
Art by Megan Rooney. Source: mynormal.ca

Open Your Heart to This Beautiful Gaucher Story

  • Post author:Ronald Ledsen
  • Post published:November 23, 2016
  • Post category:Gaucher Disease/Rare Disease

So…I just found out that apparently time travel is not something you can ACTUALLY do. There go all of my carefully-laid plans for what I want to be when I…

Continue Reading Open Your Heart to This Beautiful Gaucher Story
Obamacare: del lado bueno o malo lado del costo de los medicamentos crónicos?
stevepb / Pixabay

Obamacare: del lado bueno o malo lado del costo de los medicamentos crónicos?

  • Post author:Patient Worthy Contributor
  • Post published:November 23, 2016
  • Post category:Rare Disease

Básicamente todo el mundo ha visto afectada por los altos costos de la atención médica en algún momento de su vida, y para muchos, no mucho cambió cuando Obamacare (Affordable…

Continue Reading Obamacare: del lado bueno o malo lado del costo de los medicamentos crónicos?

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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