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Daily Archives: March 8, 2017

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¿Por qué Canadá es el mejor lugar para tener FQ?
Why Canada is the place to be for Cystic Fibrosis research.

¿Por qué Canadá es el mejor lugar para tener FQ?

  • Post author:Jean Martell
  • Post published:March 8, 2017
  • Post category:Cystic Fibrosis/Español/Rare Disease

Ay Canadá, la gente piensa que eres todo acerca de ser muy educado y su jarabe de arce riquísima, pero yo sé la verdad: Usted sabe cómo luchar y que…

Continue Reading ¿Por qué Canadá es el mejor lugar para tener FQ?
Anuncio: 3 días para la presentación de entrada a la nueva iniciativa del NIH
Announcement

Anuncio: 3 días para la presentación de entrada a la nueva iniciativa del NIH

  • Post author:Jean Martell
  • Post published:March 8, 2017
  • Post category:Español/Rare Disease

Sólo quedan TRES días más para que las familias, los grupos de defensa de los pacientes y los investigadores den aportes a la nueva iniciativa del NIH sobre la investigación…

Continue Reading Anuncio: 3 días para la presentación de entrada a la nueva iniciativa del NIH
GN Vigilance Made Easy for Parents Just When They Need It!
[Source: pixabay.com]

GN Vigilance Made Easy for Parents Just When They Need It!

  • Post author:Sabina Kennedy
  • Post published:March 8, 2017
  • Post category:Glomerulonephritis

Parenting can be very stressful. Whether a stay-at-home parent or a working parent, a single parent or a married parent, mother or father, parent of one child or several children,…

Continue Reading GN Vigilance Made Easy for Parents Just When They Need It!
This is the Future of Spinal Muscular Atrophy
Source: pixabay.com

This is the Future of Spinal Muscular Atrophy

  • Post author:Nia
  • Post published:March 8, 2017
  • Post category:Rare Disease/Spinal Muscular Atrophy/Timely

An 8-year-old child in Fresno, California is receiving an FDA approved miracle drug that will possibly lengthen her life. Hayden Calafiore is the first to receive the injection as a…

Continue Reading This is the Future of Spinal Muscular Atrophy
To Beat Wilson’s Disease, You Need to Strike Early
Source: pixabay.com

To Beat Wilson’s Disease, You Need to Strike Early

  • Post author:Nia
  • Post published:March 8, 2017
  • Post category:Rare Disease/Timely/Wilson Disease

Wilson’s disease is a genetic disease that may cause copper build up which effects both the brain and liver. Wilson’s disease affects about 1 in 30,000 people in the world.…

Continue Reading To Beat Wilson’s Disease, You Need to Strike Early
SMA Online Survey: You Could Win Great Prizes
[Source: pixabay.com]

SMA Online Survey: You Could Win Great Prizes

  • Post author:Nia
  • Post published:March 8, 2017
  • Post category:Rare Disease/Spinal Muscular Atrophy/Timely

Cure SMA is a nonprofit organization that has officially launched their 2017 SMA survey. This is a survey is available to those with spinal muscular atrophy (SMA) across the world. Also,…

Continue Reading SMA Online Survey: You Could Win Great Prizes
How This Dynamic Duo is Beating Tourette’s Stigma
Source: pixabay.com

How This Dynamic Duo is Beating Tourette’s Stigma

  • Post author:Nia
  • Post published:March 8, 2017
  • Post category:Rare Disease/Timely/Tourette syndrome

A year ago, a WUSA9 News reporter named Nikki Burdine of Dumfries, Virginia shared her personal story with the world. She revealed that she has Tourette’s syndrome. In her news…

Continue Reading How This Dynamic Duo is Beating Tourette’s Stigma
¿Qué causa la narcolepsia? Una mirada a la ciencia detrás de los Titulares

¿Qué causa la narcolepsia? Una mirada a la ciencia detrás de los Titulares

  • Post author:Jean Martell
  • Post published:March 8, 2017
  • Post category:Español/Narcolepsy/Rare Disease

¿Qué es todo esto acerca de comer un pedazo de manzana y luego caer en un sueño profundo durante años y años? Eso es lo que le pasó a Blancanieves,…

Continue Reading ¿Qué causa la narcolepsia? Una mirada a la ciencia detrás de los Titulares
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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