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Daily Archives: November 8, 2016

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Meme: Courageous Hearts

Meme: Courageous Hearts

  • Post author:Rebekah
  • Post published:November 8, 2016
  • Post category:Rare Disease

Spoonies are strong every day and in spite of a lot. Don't forget that you have a courageous heart <3

Continue Reading Meme: Courageous Hearts
Why a Lifetime of ERT May Be a Thing of the Past
Source: www.pixabay.com

Why a Lifetime of ERT May Be a Thing of the Past

  • Post author:James Ernest Cassady
  • Post published:November 8, 2016
  • Post category:Gaucher Disease/Pompe Disease/Rare Disease

In 1964, Henri Hers was studying Pompe disease when he suggested that the absence of lysosomal enzymes could be responsible for several other conditions. He was right, and a category of…

Continue Reading Why a Lifetime of ERT May Be a Thing of the Past
When You’ve Lost Your Faith in Humanity, Look to This SBS Girl
Pixabay

When You’ve Lost Your Faith in Humanity, Look to This SBS Girl

  • Post author:Lady Kehveen Abernathy
  • Post published:November 8, 2016
  • Post category:Rare Disease/Short bowel syndrome

She's young. She's beautiful. And she's living with short bowel syndrome, or SBS. Shante Smith was born with SBS, a disease that renders it difficult for the body to absorb and…

Continue Reading When You’ve Lost Your Faith in Humanity, Look to This SBS Girl
This Amazing Company Puts Gene Testing in the Spotlight
[Source: Pixabay.com]

This Amazing Company Puts Gene Testing in the Spotlight

  • Post author:Erica Zahn
  • Post published:November 8, 2016
  • Post category:Rare Disease/SCID

It takes an average of seven years for a patient with a rare disease like severe combined immunodeficiency (SCID) to receive a correct diagnosis; and that comes after the patient…

Continue Reading This Amazing Company Puts Gene Testing in the Spotlight
No Spitting on the Platform; In the Lab, It’s Okay
[Source: Pixabay.com]

No Spitting on the Platform; In the Lab, It’s Okay

  • Post author:Erica Zahn
  • Post published:November 8, 2016
  • Post category:Cushing Disease/Rare Disease

According to Hershel Raff, Ph.D, a professor of medicine at the Medical College of Wisconsin, Cushing syndrome is one of the most difficult diseases to diagnose. Raff maintains that by using a…

Continue Reading No Spitting on the Platform; In the Lab, It’s Okay
69,000 People Want New Treatments for Acromegaly NOW
Pixabay

69,000 People Want New Treatments for Acromegaly NOW

  • Post author:Erica Zahn
  • Post published:November 8, 2016
  • Post category:Acromegaly/Rare Disease

If you have acromegaly, you know that available treatment options are very limited, so when Chiasma, a pharmaceutical company based in Waltham, Massachusetts, received notification that the FDA was not…

Continue Reading 69,000 People Want New Treatments for Acromegaly NOW
Check Out These Interesting Facts on Aplastic Anemia and Expand Your Mind
[Source: Pixabay.com]

Check Out These Interesting Facts on Aplastic Anemia and Expand Your Mind

  • Post author:Alisha Stone
  • Post published:November 8, 2016
  • Post category:Aplastic anemia

If you are trying to dive into aplastic anemia, here are some interesting facts from the Seattle Children’s Hospital that you should definitely check out. First, for anyone who’s been…

Continue Reading Check Out These Interesting Facts on Aplastic Anemia and Expand Your Mind
Got Gaucher? You WILL Want to Know This!
Source: pixabay.com

Got Gaucher? You WILL Want to Know This!

  • Post author:EmpatheticBadass
  • Post published:November 8, 2016
  • Post category:Gaucher Disease/Rare Disease

Those of us with Gaucher disease who know how much uncertainty, fear, and anger enzyme replacement treatment (ERT) shortages cause, REJOICE! Researchers have found that the oral substrate reduction therapy…

Continue Reading Got Gaucher? You WILL Want to Know This!
Esta es la mejor historia de exito entre mama e hija

Esta es la mejor historia de exito entre mama e hija

  • Post author:Patient Worthy Contributor
  • Post published:November 8, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Usted no va a venir a través de demasiadas personas en sus vidas como Elaine Gómez y su hija, Michelle DeMont. Y es probable que no se encontrará con el…

Continue Reading Esta es la mejor historia de exito entre mama e hija

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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