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Daily Archives: February 14, 2017

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A New Treatment for Kids With HAE Shines the Light on Hope
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A New Treatment for Kids With HAE Shines the Light on Hope

  • Post author:Erica Zahn
  • Post published:February 14, 2017
  • Post category:HAE/Rare Disease

Hereditary angioedema (HAE) causes unexpected swelling in the hands, feet, abdomen, and face. HAE can be fatal when the patient has a laryngeal attack, where swelling in the throat makes it impossible…

Continue Reading A New Treatment for Kids With HAE Shines the Light on Hope
Happy Valentine’s Day Patient Worthians!
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Happy Valentine’s Day Patient Worthians!

  • Post author:Patient Worthy Contributor
  • Post published:February 14, 2017
  • Post category:Rare Disease

You can give without loving, but you cannot love without giving. -Amy Carmichael Don't Forget-- It's also National Donor Day. Give one of the ultimate gifts of love this Valentine's…

Continue Reading Happy Valentine’s Day Patient Worthians!
She was Called Lazy, Then Told She’d Never Walk
Pixabay

She was Called Lazy, Then Told She’d Never Walk

  • Post author:Rebekah
  • Post published:February 14, 2017
  • Post category:Spinal Muscular Atrophy

A frequent problem with for rare disease patients worldwide is being correctly diagnosed. Prior to the diagnosis you won't know the proper treatments, you don't know why you're experiencing your…

Continue Reading She was Called Lazy, Then Told She’d Never Walk
DMD Drug Sales Halted Amid Controversy

DMD Drug Sales Halted Amid Controversy

  • Post author:Rebekah
  • Post published:February 14, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

What at first glance sounded like nothing but good news, the FDA's approval of an Duchenne Muscular Dystrophy drug, has complicated undertones. It was announced last week that Emflaza (deflazacort) was approved…

Continue Reading DMD Drug Sales Halted Amid Controversy
My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia

  • Post author:Patient Worthy Contributor
  • Post published:February 14, 2017
  • Post category:Dystonia

I love my husband. He is my best friend. When we stood before God and our family to exchange vows, we made a commitment for better or for worse. Wow,…

Continue Reading My Saving Grace: How My Bipolar Husband Was the Best Thing for My Cervical Dystonia
What We See When We See Cerebral Palsy
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What We See When We See Cerebral Palsy

  • Post author:Al Pendleton
  • Post published:February 14, 2017
  • Post category:Cerebral Palsy/Hemiplegia/Rare Disease

The first time I encountered him, I stared at him, mouth agape with genuine shock on my face. He could not fail to notice my expression. Thankfully, he didn’t take…

Continue Reading What We See When We See Cerebral Palsy
Brotherly Love is in the Star(gardt)s!
[Source: pixabay.com]

Brotherly Love is in the Star(gardt)s!

  • Post author:PW Blogger
  • Post published:February 14, 2017
  • Post category:Stargardt Disease

I always love to read a heart-warming story. To me there is nothing greater than when family comes together during a hard time. That is exactly what two brothers did.…

Continue Reading Brotherly Love is in the Star(gardt)s!
Exciting Research Has Promise in Parkinson’s Treatments
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Exciting Research Has Promise in Parkinson’s Treatments

  • Post author:Al Pendleton
  • Post published:February 14, 2017
  • Post category:Parkinson's Disease/Rare Disease

Recent studies show that there may be a new treatment option for people who have specific forms of hereditary early-onset Parkinson’s disease. It’s actually a new twist on an old…

Continue Reading Exciting Research Has Promise in Parkinson’s Treatments
CRPS: La enfermedad más dolorosa que usted nunca ha conocido
CRPS is a the most painful disease you've never heard of.

CRPS: La enfermedad más dolorosa que usted nunca ha conocido

  • Post author:Jean Martell
  • Post published:February 14, 2017
  • Post category:Complex Regional Pain Syndrome/Español/Rare Disease

¿Qué pasa si vives con dolor crónico todos los días - y no sólo pequeños dolores, pero dolor de nivel 8 en una escala de 1 a 10? Kirah DeCarlo…

Continue Reading CRPS: La enfermedad más dolorosa que usted nunca ha conocido

Featured


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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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