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Daily Archives: September 19, 2016

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The Surprising Hidden Benefit of Laron Syndrome
[Source: pixabay.com]

The Surprising Hidden Benefit of Laron Syndrome

  • Post author:Erica Zahn
  • Post published:September 19, 2016
  • Post category:Laron syndrome/Rare Disease

People with Laron syndrome, an autosomal recessive disorder, have mutations or deletions of the GHR gene which results in a type of dwarfism. It is most commonly seen South America, in Mediterranean countries,…

Continue Reading The Surprising Hidden Benefit of Laron Syndrome
Little Girl With CAPS Faces a Bright Future
Source: www.pixabay.com

Little Girl With CAPS Faces a Bright Future

  • Post author:Ronald Ledsen
  • Post published:September 19, 2016
  • Post category:CAPS/FCAS/Muckle-Wells Syndrome/Rare Disease

Here’s a charming and ultimately optimistic little story about how a mother’s vigilance combined with the right doctors and hospitals can make a real difference in a child’s life—and how…

Continue Reading Little Girl With CAPS Faces a Bright Future
Aplastic Anemia: A Video Review
[Source: pixabay.com]

Aplastic Anemia: A Video Review

  • Post author:Erica Zahn
  • Post published:September 19, 2016
  • Post category:Aplastic anemia/Rare Disease

Aplastic anemia is both a bone and a blood disease. A person with this condition has bone marrow that no longer makes red blood cells, white blood cells, or platelets.…

Continue Reading Aplastic Anemia: A Video Review
What is the “Terrible Paradox” of FH?
[Source: pixabay.com]

What is the “Terrible Paradox” of FH?

  • Post author:James Ernest Cassady
  • Post published:September 19, 2016
  • Post category:Familial Hypercholesterolemia/Rare Disease/Timely

The National Lipid Association hosted its 2016 Scientific Sessions from May 19-22 of this year and included sessions on familial hypercholesterolemia (FH). Now, in recognition of FH Awareness Day (September…

Continue Reading What is the “Terrible Paradox” of FH?
Pisoteando la distonía Por Diversión e inspiración
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Pisoteando la distonía Por Diversión e inspiración

  • Post author:Patient Worthy Contributor
  • Post published:September 19, 2016
  • Post category:Dystonia/Rare Disease

La distonía puede retardar su cuerpo, pero que no puede matar su espíritu Pocas veces en la vida son tan emocionantes -o tan agitado, como los últimos días de la…

Continue Reading Pisoteando la distonía Por Diversión e inspiración
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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