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Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!

  • Post author:Patient Worthy Contributor
  • Post published:May 27, 2016
  • Post category:Cystic Fibrosis/Ehlers-Danlos Syndrome/Rare Disease

Happy Memorial Day Weekend Patient Worthians! Memorial Day is the perfect opportunity to hang out with friends and family, and appreciate the times where life seems somewhat "normal". But before…

Continue Reading Editor’s Choice: Dear Ehlers-Danlos Syndrome, You Suck!
Syngap-1 First International Conference!

Syngap-1 First International Conference!

  • Post author:Rebekah
  • Post published:April 1, 2016
  • Post category:Rare Disease

Congratulate this Mom- She knew something was wrong. She went through 19 specialists in 4 years. She eventually got a diagnoses.  Her son, had Syngap1, a very rare, gene based,…

Continue Reading Syngap-1 First International Conference!
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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