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Daily Archives: December 14, 2016

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Patrick Cogan and His Fight Against Friedreich’s Ataxia
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Patrick Cogan and His Fight Against Friedreich’s Ataxia

  • Post author:James Ernest Cassady
  • Post published:December 14, 2016
  • Post category:Friedreich ataxia/Rare Disease

"Success largely depends on two factors. Number one is each individual person's decision to take action. Number two is our interaction with each other and support of each other in…

Continue Reading Patrick Cogan and His Fight Against Friedreich’s Ataxia
TS: What Lurks in the Forest is Employment
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TS: What Lurks in the Forest is Employment

  • Post author:Alisha Stone
  • Post published:December 14, 2016
  • Post category:Rare Disease/Tourette syndrome

Kudos to the BBC for their documentary: Employable Me for bringing to light the plight of people living with Tourette syndrome (TS)! Tourette syndrome is seriously stigmatized, which adds layers of…

Continue Reading TS: What Lurks in the Forest is Employment
The Truth is, You Never Stop Being a Mother
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The Truth is, You Never Stop Being a Mother

  • Post author:Sabina Kennedy
  • Post published:December 14, 2016
  • Post category:Polycythemia vera/Rare Disease

When your kids become adults, does being their mother stop? If you ask Susannah Prater, the answer is a resounding, “Absolutely not!” The Waverly News tells us that Susannah is a…

Continue Reading The Truth is, You Never Stop Being a Mother
What is it Like Living with Addison’s Disease?
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What is it Like Living with Addison’s Disease?

  • Post author:Jennifer Walker
  • Post published:December 14, 2016
  • Post category:Addison's Disease/Rare Disease

Living with Addison’s disease can be a challenge. Addison’s disease, also known as adrenal insufficiency or hypocortisolism, is a rare disorder of the endocrine system and affects approximately 1 out…

Continue Reading What is it Like Living with Addison’s Disease?
Trigeminal Neuralgia: How to Avoid 911 by Learning the 411
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Trigeminal Neuralgia: How to Avoid 911 by Learning the 411

  • Post author:Alisha Stone
  • Post published:December 14, 2016
  • Post category:Rare Disease/Trigeminal Neuralgia (Tic Douloureux)

I found an interesting article about Trigeminal Neuralgia (TNA) which was a real eye-opener for me, and I’d like to share the highlights with you. If you or your loved…

Continue Reading Trigeminal Neuralgia: How to Avoid 911 by Learning the 411
Te preguntamos, $100 mil en efectivo o cura para la espondilitis anquilosante?

Te preguntamos, $100 mil en efectivo o cura para la espondilitis anquilosante?

  • Post author:Patient Worthy Contributor
  • Post published:December 14, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Para alguien que vive con una enfermedad crónica progresiva, la vida no es ninguna "caja de bombones." No importa cómo las personas positivas u optimistas son, vivir con el dolor…

Continue Reading Te preguntamos, $100 mil en efectivo o cura para la espondilitis anquilosante?

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Metastatic Breast Cancer: Navigating Grief


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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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