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Daily Archives: February 22, 2017

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How to Solve the Fabry Disease Mystery
Source: pixabay.com

How to Solve the Fabry Disease Mystery

  • Post author:Sabina Kennedy
  • Post published:February 22, 2017
  • Post category:Fabry Disease/Rare Disease

Most people have heard the term “rare disease,” but far fewer can name a rare disease let alone imagine what life might be like for those who have one. When…

Continue Reading How to Solve the Fabry Disease Mystery
Blogger Shares her Story of Hemiplegia
[Source: pixabay.com]

Blogger Shares her Story of Hemiplegia

  • Post author:Erica Zahn
  • Post published:February 22, 2017
  • Post category:Hemiplegia/Rare Disease

When the human brain experiences a sudden disruption of blood flow, a type of paralysis called "hemiplegia" can result. Paralysis can occur on either the right or left side of…

Continue Reading Blogger Shares her Story of Hemiplegia
This Coalition for Hemophilia B’s Event is Just a Few Weeks Away!
Pixabay

This Coalition for Hemophilia B’s Event is Just a Few Weeks Away!

  • Post author:Patient Worthy Contributor
  • Post published:February 22, 2017
  • Post category:Hemophilia B

If you are suffering from or caring for someone with Hemophilia B, then this event is for you. The 11th Annual Hemophilia B Symposium When: Fri, Mar 31, 20177:00am and Sun, Apr…

Continue Reading This Coalition for Hemophilia B’s Event is Just a Few Weeks Away!
Hope from the Darkest of Diagnoses
[Source: pixabay.com]

Hope from the Darkest of Diagnoses

  • Post author:Al Pendleton
  • Post published:February 22, 2017
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

Most people who have heard of idiopathic pulmonary fibrosis (IPF), we probably imagine a grandparent with their oxygen tank on a little cart and nasal tubes hooked over his/her ears.…

Continue Reading Hope from the Darkest of Diagnoses
Daylight Savings is Suddenly Sleepy Saturday for Narcolepsy Awareness
Source: pixabay

Daylight Savings is Suddenly Sleepy Saturday for Narcolepsy Awareness

  • Post author:Patient Worthy Contributor
  • Post published:February 22, 2017
  • Post category:Narcolepsy/Rare Disease

In college, everyone loved the "Fall back" night of Daylight Savings Time. We got an extra hour of sleep and it was much needed considering we were likely celebrating Halloween the night…

Continue Reading Daylight Savings is Suddenly Sleepy Saturday for Narcolepsy Awareness
How Dysautonomia Empathy Improves the World
Source: pixabay.com

How Dysautonomia Empathy Improves the World

  • Post author:Sabina Kennedy
  • Post published:February 22, 2017
  • Post category:Dysautonomia/POTS/Rare Disease

It’s very possible that you have found yourself in a situation where you would have liked to improve somebody's mood, but you may not have known how to do it.…

Continue Reading How Dysautonomia Empathy Improves the World
Mama e Hija: Cambiando el Mundo
Hero mom helps daughter tackle Bechet's disease.

Mama e Hija: Cambiando el Mundo

  • Post author:Jean Martell
  • Post published:February 22, 2017
  • Post category:Behçet's/Español/Rare Disease

No hace mucho tiempo, empecé a seguir una prensa sobre una adorable joven llamada, Maddie, de Lawndale, Carolina del Norte, que vive con la enfermedad de Behçet, y estoy encantada…

Continue Reading Mama e Hija: Cambiando el Mundo

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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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