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Daily Archives: January 26, 2017

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How to Do FA the Right Way
[Source: pixabay.com]

How to Do FA the Right Way

  • Post author:Sabina Kennedy
  • Post published:January 26, 2017
  • Post category:Friedreich ataxia

Whenever we’re struggling with something, we assume we are alone. We feel like we are the only ones. But in September of 1997, a small group of Friedreich’s ataxia (FA)…

Continue Reading How to Do FA the Right Way
The “Mad” Science Making Mad Progress Toward a CGD Cure
Source: pixabay.com

The “Mad” Science Making Mad Progress Toward a CGD Cure

  • Post author:Al Pendleton
  • Post published:January 26, 2017
  • Post category:CGD/Primary Immunodeficiencies/Timely

When most people hear about scientists messing around with genetic manipulation, they think of the antagonist of a comic book trying to make super soldiers. But, that’s not what geneticists…

Continue Reading The “Mad” Science Making Mad Progress Toward a CGD Cure
Tomorrow’s Epidermolysis Bullosa Treatment is All in the Genes
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Tomorrow’s Epidermolysis Bullosa Treatment is All in the Genes

  • Post author:Ronald Ledsen
  • Post published:January 26, 2017
  • Post category:Epidermolysis Bullosa/Rare Disease/Timely

It’s always heartening to see scientists take up research in therapeutic areas that are under served and poorly understood. And when their research yields positive results, it’s downright amazing. Honestly,…

Continue Reading Tomorrow’s Epidermolysis Bullosa Treatment is All in the Genes
PSC Peeps: The Healthy Diet of Your Dreams
Source: pixabay.com

PSC Peeps: The Healthy Diet of Your Dreams

  • Post author:Sabina Kennedy
  • Post published:January 26, 2017
  • Post category:Primary sclerosing cholangitis

Are you living with primary sclerosing cholangitis (PSC) and looking for a suggestion on dietary improvements? If so, there may be help navigating your options (I know there are many). I…

Continue Reading PSC Peeps: The Healthy Diet of Your Dreams
The Straight Dope on Transverse Myelitis May Inspire More Hope
[Source: pixabay.com]

The Straight Dope on Transverse Myelitis May Inspire More Hope

  • Post author:Alisha Stone
  • Post published:January 26, 2017
  • Post category:Transverse myelitis

If you or your loved one suspect you may have transverse myelitis (TM) you need to get to a doctor right away. TM is a serious neurological condition that requires…

Continue Reading The Straight Dope on Transverse Myelitis May Inspire More Hope
Si usted lo tiene sarcoidosis, usted necesita saber esto
https://pixabay.com/en/diagnosis-xray-chest-lungs-ribs-1476620/

Si usted lo tiene sarcoidosis, usted necesita saber esto

  • Post author:Patient Worthy Contributor
  • Post published:January 26, 2017
  • Post category:Rare Disease/Sarcoidosis

El 90-95% de las personas que viven con la sarcoidosis, la enfermedad afecta a los pulmones. A medida que crecen granulomas a través de los órganos, que pueden experimentar tos,…

Continue Reading Si usted lo tiene sarcoidosis, usted necesita saber esto

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