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Daily Archives: June 5, 2017

Home » Archives for June 5, 2017
Girl With SMA Gets by With a Little Help from Her Robot Friend
https://pixabay.com/en/girl-forward-digital-digitization-2181682/

Girl With SMA Gets by With a Little Help from Her Robot Friend

  • Post author:Nia
  • Post published:June 5, 2017
  • Post category:Rare Disease/Spinal Muscular Atrophy

Addilynne is a 3-year-old with living with a disease that affects her muscle movement and strength: spinal muscular atrophy (SMA). But Amanda, her mother, states that SMA is an acronym for…

Continue Reading Girl With SMA Gets by With a Little Help from Her Robot Friend
How The Transverse Myelitis Association Can Help You
Source: pixabay.com

How The Transverse Myelitis Association Can Help You

  • Post author:Trudy Horsting
  • Post published:June 5, 2017
  • Post category:Rare Disease/Transverse myelitis

The Transverse Myelitis Association is a nonprofit founded by individuals whose passion for advocating for the disorder is deep-seated. All five of the families who have worked to establish it…

Continue Reading How The Transverse Myelitis Association Can Help You
AS and Exercise: If You Don’t Use It, You Lose It
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AS and Exercise: If You Don’t Use It, You Lose It

  • Post author:Al Pendleton
  • Post published:June 5, 2017
  • Post category:Ankylosing Spondylitis/Multiple Sclerosis/Parkinson's Disease/Rare Disease

You know the old adage that if you give someone an inch, they’ll take a mile? While it is highly unlikely that whoever this “someone” is will take 63,360 times…

Continue Reading AS and Exercise: If You Don’t Use It, You Lose It
Dravet Syndrome In the News

Dravet Syndrome In the News

  • Post author:Sarah Lau
  • Post published:June 5, 2017
  • Post category:Dravet Syndrome/Rare Disease

Want some more news, events and announcements on Dravet syndrome? We got 'em! [one_half]     [/one_half] [one_half_last] Opko Health Inc. is Closing In on a Treatment for Dravet Syndrome…

Continue Reading Dravet Syndrome In the News
Conquering the Mountain of Guillain-Barre Syndrome
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Conquering the Mountain of Guillain-Barre Syndrome

  • Post author:Al Pendleton
  • Post published:June 5, 2017
  • Post category:Guillain Barré syndrome/Rare Disease

For anyone out there who has climbed a mountain, you know one of the universal truths of all monumental tasks: A mountain always looks bigger when you’re standing at the…

Continue Reading Conquering the Mountain of Guillain-Barre Syndrome
The Parenting Truth about Gastroschisis
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The Parenting Truth about Gastroschisis

  • Post author:Sabina Kennedy
  • Post published:June 5, 2017
  • Post category:Gastroschisis

Regardless of whether labor is long or short, whether it is hard or easy, whether a baby is born vaginally or by cesarean, most parents recall the first hours and…

Continue Reading The Parenting Truth about Gastroschisis
Dropping Sick Beats and Beating Sickle Cell Anemia
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Dropping Sick Beats and Beating Sickle Cell Anemia

  • Post author:Ronald Ledsen
  • Post published:June 5, 2017
  • Post category:Rare Disease/Sickle cell anemia

As much as it pains me as a “word guy" to admit it, music is probably unparalleled among all the other arts in its ability to motivate action and change…

Continue Reading Dropping Sick Beats and Beating Sickle Cell Anemia
Be Inspired! 8-Year-Old Superhero Takes on ALD
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Be Inspired! 8-Year-Old Superhero Takes on ALD

  • Post author:Sabina Kennedy
  • Post published:June 5, 2017
  • Post category:Adrenoleukodystrophy

Second grade. So big but so little. An academic year filled with spelling and vocabulary words, simple math fast facts, and learning how to use a keyboard. And maybe at…

Continue Reading Be Inspired! 8-Year-Old Superhero Takes on ALD

OF INTEREST


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X-Linked Hypophosphatemia: Unnderstanding this Hereditary, Progressive, and Lifelong Condition


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Catalyst’s LEMS Aware Podcast Helps Connect Patients

Patient Stories

STUDY OF THE WEEK

Welcome to Study of the Week. We go in-depth and select a study we think is of particular interest, discussing details, explaining its importance, who may be impacted and lots more!

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RARE CLASSROOM

Welcome to the Rare Classroom, a new series from Patient Worthy. Rare Classroom is designed for the curious reader who wants to get informed on some of the rarest, most mysterious diseases and conditions. This series is an opportunity to learn the basics about some of the diseases that almost no one hears much about.

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