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Daily Archives: January 11, 2017

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Aplastic Anemia: An Outstanding Story That Will Inspire All
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Aplastic Anemia: An Outstanding Story That Will Inspire All

  • Post author:Alisha Stone
  • Post published:January 11, 2017
  • Post category:Aplastic anemia/Rare Disease

Man, I’m not so sure that I believe in angels, but my heart is overjoyed whenever I hear about strangers who’ve donated ANYTHING to help ANYBODY! With aplastic anemia—depending on…

Continue Reading Aplastic Anemia: An Outstanding Story That Will Inspire All
Dysautonomia Chick Storming Capitol Hill is the Best News Ever
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Dysautonomia Chick Storming Capitol Hill is the Best News Ever

  • Post author:Sabina Kennedy
  • Post published:January 11, 2017
  • Post category:Complex Regional Pain Syndrome/Dysautonomia/Ehlers-Danlos Syndrome/POTS/Rare Disease

It has been said that there is strength in numbers, and we are much stronger together! That’s probably why I connected with Shira Strongin, a young teen who lives with…

Continue Reading Dysautonomia Chick Storming Capitol Hill is the Best News Ever
IDK Man, This Kid Living with Crohn’s Just Rocks
Source: Pexels.com

IDK Man, This Kid Living with Crohn’s Just Rocks

  • Post author:Lady Kehveen Abernathy
  • Post published:January 11, 2017
  • Post category:pediatric ulcerative colitis/Rare Disease

Outside his window, Josh watched, enamored, the colors of the sunset shifting, turning the sky orange, and then pink, and finally a bruised purple. He could almost forget where he…

Continue Reading IDK Man, This Kid Living with Crohn’s Just Rocks
Primary Myelofibrosis: When Your JAK2 Gene Hijacks Your Health
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Primary Myelofibrosis: When Your JAK2 Gene Hijacks Your Health

  • Post author:Erica Zahn
  • Post published:January 11, 2017
  • Post category:primary myelofibrosis/Rare Disease

Your health could seriously be jacked if you have the JAK2 gene. Why? You're likely affected by primary myelofibrosis, a genetic mishap that causes scarring in the bone marrow. Of…

Continue Reading Primary Myelofibrosis: When Your JAK2 Gene Hijacks Your Health
How One Little EB Super Cutie is Changing Her World
[Source: pixabay.com]

How One Little EB Super Cutie is Changing Her World

  • Post author:Sabina Kennedy
  • Post published:January 11, 2017
  • Post category:Epidermolysis Bullosa/Rare Disease

When we need it most, stories can inspire, encourage, and quite frankly, make us feel good. Especially if the story is about a super cute little eight-year-old girl who was…

Continue Reading How One Little EB Super Cutie is Changing Her World
La gripe porcina y la narcolepsia: ¿Cuál es el vínculo?

La gripe porcina y la narcolepsia: ¿Cuál es el vínculo?

  • Post author:Patient Worthy Contributor
  • Post published:January 11, 2017
  • Post category:Narcolepsy/Rare Disease

En el 2009, una cepa desagradable de la gripe, la gripe porcina es decir, corrió alrededor del globo golpear a la gente hacia abajo como si fueran bolos. Los primeros…

Continue Reading La gripe porcina y la narcolepsia: ¿Cuál es el vínculo?

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