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Daily Archives: July 11, 2016

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Here’s How Social Media Can Save You From Doctors

Here’s How Social Media Can Save You From Doctors

  • Post author:Erica Zahn
  • Post published:July 11, 2016
  • Post category:Dysautonomia/Rare Disease

If 70 million people are suffering from dysautonomia, why is the medical community so clueless when it comes to diagnosing this disorder? Dysautonomia occurs when the autonomic immune nervous system--…

Continue Reading Here’s How Social Media Can Save You From Doctors
Bringing Awareness: Mycosis Fungoides

Bringing Awareness: Mycosis Fungoides

  • Post author:Kristen Lord
  • Post published:July 11, 2016
  • Post category:mycosis fungoides/Rare Disease

Mycosis Fungoides is a rare type of lymphoma cancer. Most often, it causes skin lesions called patches that are flat, scaly, pink or red areas on the skin that can be…

Continue Reading Bringing Awareness: Mycosis Fungoides
Who Can Help You Free Your Voice with Parkinson’s?

Who Can Help You Free Your Voice with Parkinson’s?

  • Post author:PW Blogger
  • Post published:July 11, 2016
  • Post category:Parkinson's Disease/Rare Disease

Parkinson’s disease damages the nervous system, and like other motor system disorders, it affects nearly every facet of life. One of the rarely-discussed symptoms of Parkinson's that can have a…

Continue Reading Who Can Help You Free Your Voice with Parkinson’s?
Different, not Lesser, for Being Sick

Different, not Lesser, for Being Sick

  • Post author:Rebekah
  • Post published:July 11, 2016
  • Post category:Rare Disease

Living with an illness is going to impact you, there's no way around it, being sick Isn't something to be taken lightly How does it influence you? Despite the toll…

Continue Reading Different, not Lesser, for Being Sick
Dancing With Huntington’s is the New Craze You Need to Know

Dancing With Huntington’s is the New Craze You Need to Know

  • Post author:PW Blogger
  • Post published:July 11, 2016
  • Post category:Huntington's disease/Rare Disease

Dancing is all the rage these days, with shows like Dancing With the Stars bringing in top ratings. People are enrolling more in dance classes, and going to the ballrooms in…

Continue Reading Dancing With Huntington’s is the New Craze You Need to Know
How to Learn More About Hemophilia AND Get Your Disney On
Source: www.pixabay.com

How to Learn More About Hemophilia AND Get Your Disney On

  • Post author:EmpatheticBadass
  • Post published:July 11, 2016
  • Post category:Hemophilia B/Rare Disease/Timely

Channel your inner Mickey and put those big ears to the ground! What’s that you hear? Why, it’s the sound of a whole lotta cutting-edge, exciting resources from the hemophilia community heading to…

Continue Reading How to Learn More About Hemophilia AND Get Your Disney On
Una vez una idea secundaria, los medicamentos huérfanos ahora tienen foco propio

Una vez una idea secundaria, los medicamentos huérfanos ahora tienen foco propio

  • Post author:Patient Worthy Contributor
  • Post published:July 11, 2016
  • Post category:Rare Disease

En el mundo de hoy, hay 30 millones de estadounidenses afectados por 7.000 formas diferentes de enfermedades raras, todos con necesidad de tratamiento. Pero debido a que las enfermedades son…

Continue Reading Una vez una idea secundaria, los medicamentos huérfanos ahora tienen foco propio

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Rethinking What It Means to Live With Acromegaly


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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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