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pura syndrome foundation

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PURA Syndrome Foundation’s Annual PURA Syndrome Conference

  • Post author:James Moore
  • Post published:June 22, 2019
  • Post category:

4th Annual PURA Syndrome Conference The conference will be an opportunity for patient families and medical experts to meet and learn about the latest in PURA syndrome research. Additionally, families…

Continue Reading PURA Syndrome Foundation’s Annual PURA Syndrome Conference
How to Find Joy in Daily Life with PURA Syndrome
https://pixabay.com/en/daisies-flower-spring-plant-nature-388946/

How to Find Joy in Daily Life with PURA Syndrome

  • Post author:Trudy Horsting
  • Post published:June 9, 2017
  • Post category:PURA Syndrome/Rare Disease

Paige Hildring is nine years old. She’s one of 108 people in the entire world with PURA Syndrome. PURA Syndrome is a neurodevelopmental disorder and those who suffer from it…

Continue Reading How to Find Joy in Daily Life with PURA Syndrome
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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