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Daily Archives: April 27, 2017

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This CRPS Debate Will Outrage You
https://pixabay.com/en/man-angry-irritated-unhappy-mask-390339/

This CRPS Debate Will Outrage You

  • Post author:Sabina Kennedy
  • Post published:April 27, 2017
  • Post category:Complex Regional Pain Syndrome

No matter how mentally flexible or strong you are, we all have a breaking point. Unfortunately, many of us tend to push ourselves as far as possible until we reach…

Continue Reading This CRPS Debate Will Outrage You
SCID at the IDF National Conference

SCID at the IDF National Conference

  • Post author:Kathy Devanny
  • Post published:April 27, 2017
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

Remember  when PW reported on the Newborn Screening and Gene therapy for the Immune Deficiency SCID? Well guess what our friends at the Immune Deficiency Foundation are doing? The IDF…

Continue Reading SCID at the IDF National Conference
Their Youngest Sister Has Aplastic Anemia and These Girls Are Fighting Back
Source: Pixabay.com

Their Youngest Sister Has Aplastic Anemia and These Girls Are Fighting Back

  • Post author:Sabina Kennedy
  • Post published:April 27, 2017
  • Post category:Aplastic anemia/Rare Disease

Siblings! We all have our opinions. Not everyone has that close unified bond with his or her brothers and/or sisters, but one thing is certain: If the connection is there,…

Continue Reading Their Youngest Sister Has Aplastic Anemia and These Girls Are Fighting Back
IBD Self-Advocacy Is the Key
https://pixabay.com/en/superhero-girl-speed-runner-534120/

IBD Self-Advocacy Is the Key

  • Post author:Sabina Kennedy
  • Post published:April 27, 2017
  • Post category:pediatric ulcerative colitis/Rare Disease

When you’re a parent, the childhood milestones are many. Flash, blink, bam—and then the rite of passage to adulthood starts. Yeah, I know… I flew through those first 18 years…

Continue Reading IBD Self-Advocacy Is the Key
You’re Not Alone in the Tough EDS Diagnosis World
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You’re Not Alone in the Tough EDS Diagnosis World

  • Post author:Sabina Kennedy
  • Post published:April 27, 2017
  • Post category:Dysautonomia/Ehlers-Danlos Syndrome/POTS/Rare Disease

Anger. Who doesn’t get angry? From big to small stressors in life, there are far far far too many triggers to choose from that can set us off. But, what…

Continue Reading You’re Not Alone in the Tough EDS Diagnosis World

How This Group is Leading Kids with Cystinosis to Self-Advocacy

  • Post author:Sabina Kennedy
  • Post published:April 27, 2017
  • Post category:Cystinosis/Rare Disease

The transition from childhood to adulthood—the “coming of age” of boys who become young men and girls who become young women—is a significant stepping stone in everyone’s life. However, the…

Continue Reading How This Group is Leading Kids with Cystinosis to Self-Advocacy
This Woman is Turning to You to Learn About Castleman’s
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This Woman is Turning to You to Learn About Castleman’s

  • Post author:Al Pendleton
  • Post published:April 27, 2017
  • Post category:Castleman Disease/Rare Disease

What would you do if you had a disease so rare that you went weeks or months without a diagnosis? What would you do if after your diagnosis, you told…

Continue Reading This Woman is Turning to You to Learn About Castleman’s
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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