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Daily Archives: March 18, 2016

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Can You Guess What This Mom With EDS Realized?

Can You Guess What This Mom With EDS Realized?

  • Post author:Ronald Ledsen
  • Post published:March 18, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease

Here’s a heartbreaking story out of the UK that reminds us never to take anything in life for granted. A young mother with two children, Saffron Taylor, was recently diagnosed with…

Continue Reading Can You Guess What This Mom With EDS Realized?
Editor’s Choice: Rare Disease Day, Art and Shocking Videos

Editor’s Choice: Rare Disease Day, Art and Shocking Videos

  • Post author:Patient Worthy Contributor
  • Post published:March 18, 2016
  • Post category:Narcolepsy/primary ciliary dyskinesia/Rare Disease

Happy Day-After-St.Patty's-Day! As you all know, Rare Disease Week was at the very beginning of March and we have some awesome highlights for you below. One about a young artist…

Continue Reading Editor’s Choice: Rare Disease Day, Art and Shocking Videos
A Letter to My Body

A Letter to My Body

  • Post author:Patient Worthy Contributor
  • Post published:March 18, 2016
  • Post category:Intracranial Hypertension/Rare Disease

Dear Body, I thought it was past time for me to write this letter to you. You see, I owe you an apology. I spend most days considering how you've…

Continue Reading A Letter to My Body
The 2016 Time for Lyme Gala is in TWO weeks!

The 2016 Time for Lyme Gala is in TWO weeks!

  • Post author:Patient Worthy Contributor
  • Post published:March 18, 2016
  • Post category:Lyme Disease/Rare Disease

Mark your calendars: The Global Lyme Alliance is hosting the 2016 Time for Lyme Gala on April 2, 2016. Where: Hyatt Regency Greenwich When: April 2, 2016, 6:30 pm-12 am (Midnight)…

Continue Reading The 2016 Time for Lyme Gala is in TWO weeks!
Living With Aplastic Anemia In A Time of War

Living With Aplastic Anemia In A Time of War

  • Post author:James Ernest Cassady
  • Post published:March 18, 2016
  • Post category:Aplastic anemia/Rare Disease

Abdulatif al-Jasem's family was fleeing the violence in Syria when the seven-year-old began bleeding heavily. Just as they were about to make their escape on a smuggler's boat, the other…

Continue Reading Living With Aplastic Anemia In A Time of War
How One Family’s Dream Vacation Turns Into a Castleman’s Nightmare

How One Family’s Dream Vacation Turns Into a Castleman’s Nightmare

  • Post author:Ronald Ledsen
  • Post published:March 18, 2016
  • Post category:Castleman Disease/Rare Disease

When British father Matthew Parkes took his wife Pamela and daughter Sophia on an anniversary holiday to Majorca, Spain last year, he got much more than he'd ever bargained for.…

Continue Reading How One Family’s Dream Vacation Turns Into a Castleman’s Nightmare
Lo qué usted necesita saber sobre este nuevo tratamiento para la fibrosis quística

Lo qué usted necesita saber sobre este nuevo tratamiento para la fibrosis quística

  • Post author:Patient Worthy Contributor
  • Post published:March 18, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Bueno, la gente en la Comunidad de la fibrosis quística, escuchen! Un nuevo tratamiento dirigido para la fibrosis quística (FQ) puede estar en el horizonte antes vs después, y estoy…

Continue Reading Lo qué usted necesita saber sobre este nuevo tratamiento para la fibrosis quística
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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