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Daily Archives: December 7, 2015

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Did You Know? Gene Therapy Cured 18 SCID Babies

  • Post author:Rebekah
  • Post published:December 7, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

Gene therapy has been talked about for quite some time, but recent news has turned a hope into a reality for babies born with adenosine deaminase (ADA)-deficient SCID, severe combined…

Continue Reading Did You Know? Gene Therapy Cured 18 SCID Babies
Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos

Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos

  • Post author:PW Blogger
  • Post published:December 7, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Ignorance - Lack of knowledge, learning, information. Careless - Having no concern or care, not paying attention. When trying to find the perfect words to describe the youngest Jenner's latest…

Continue Reading Here’s Why You Can’t Destroy Kylie Jenner for Wheelchair Photos
Where Can Parents Go for More Information on Rare Disease Research?
University series on rare diseases.

Where Can Parents Go for More Information on Rare Disease Research?

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2015
  • Post category:Rare Disease

In addition to NIH and NORD there are many university-based centers for rare disease. Today’s feature: The Boler-Parseghian Center for Rare and Neglected Diseases at The University of Notre Dame,…

Continue Reading Where Can Parents Go for More Information on Rare Disease Research?
Meme Monday: 5 Christmas Memes That Keep on Giving

Meme Monday: 5 Christmas Memes That Keep on Giving

  • Post author:Rebekah
  • Post published:December 7, 2015
  • Post category:Rare Disease

Unless you live in a box (or don't frequent Amazon.com), it's Christmahanawkanzika time! The most wonderful time of the year! To continue the trend of the winter festivities, we wanted…

Continue Reading Meme Monday: 5 Christmas Memes That Keep on Giving

How 2 Seconds Can Save A Baby’s Life

  • Post author:Patient Worthy Contributor
  • Post published:December 7, 2015
  • Post category:Primary Immunodeficiencies/Rare Disease

Doctor, please take my baby's blood! The IDF encourages Louisiana state officials to sign into law routine screenings of newborns for SCID, or Severe Combined Immune Deficiency. The IDF's ultimate goal is to…

Continue Reading How 2 Seconds Can Save A Baby’s Life
A Muckle-Wells Journey: Skyelah’s Story

A Muckle-Wells Journey: Skyelah’s Story

  • Post author:Rebekah
  • Post published:December 7, 2015
  • Post category:CAPS/Muckle-Wells Syndrome/Rare Disease

When Skyelah was born her mother Angela immediately noticed something was different. She had three other children who had all cooed and smiled as infants. Skyelah rarely did, in fact,…

Continue Reading A Muckle-Wells Journey: Skyelah’s Story

What Causes Narcolepsy? A Look At the Science Behind the Headlines

  • Post author:Erica Zahn
  • Post published:December 7, 2015
  • Post category:Narcolepsy/Rare Disease

What's all this about taking a bite of an apple then falling into a deep sleep for years and years? That's what happened to Snow White, and as far fetched…

Continue Reading What Causes Narcolepsy? A Look At the Science Behind the Headlines

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