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Daily Archives: August 5, 2016

Home » Archives for August 5, 2016
Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease

Editor’s Choice: Acromegaly Options and Living Happy with Rare Disease

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2016
  • Post category:Acromegaly/Dysautonomia/POTS/Rare Disease

Welcome to this week's Editor's Choice! Those with acromegaly have a few options for treatment. Pituitary surgery and clinical trials for new drugs are two of these acromegaly treatment options,…

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Vacationing? #WhereInTheWorldIsIPF

Vacationing? #WhereInTheWorldIsIPF

  • Post author:Kristen Lord
  • Post published:August 5, 2016
  • Post category:IPF/Rare Disease

While you are traveling on your summer vacation, you should stop to help raise awareness for IPF this September. Take a picture of yourself at a popular destination and use…

Continue Reading Vacationing? #WhereInTheWorldIsIPF
Gene Therapy on the Horizon for Hunter Syndrome

Gene Therapy on the Horizon for Hunter Syndrome

  • Post author:Kathy Devanny
  • Post published:August 5, 2016
  • Post category:MPS II (Hunter Syndrome)/Rare Disease

Hunter Syndrome, is a heartbreaking twist of genetic fate, and we celebrate that the FDA has granted Rare Pediatric Disease Designation to REGENXBIO's RGX-121 Gene Therapy. Hunter Syndrome causes seemingly…

Continue Reading Gene Therapy on the Horizon for Hunter Syndrome
It Is A Blessing Just To Breathe. #IPF

It Is A Blessing Just To Breathe. #IPF

  • Post author:Kristen Lord
  • Post published:August 5, 2016
  • Post category:IPF/Rare Disease

Count your blessings, today and Everyday, It is a blessing just to breathe. Sometimes life moves so fast you can forget to count your blessings. Really it is a blessing…

Continue Reading It Is A Blessing Just To Breathe. #IPF
How D-ficiency and AS are Related Will Blow Your Mind
Alexas_Fotos / Pixabay

How D-ficiency and AS are Related Will Blow Your Mind

  • Post author:EmpatheticBadass
  • Post published:August 5, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Is it just me, or is EVERYBODY talking about vitamin D deficiencies these days? Suddenly, everyone I know is coming back from their health check-ups with prescriptions to combat their…

Continue Reading How D-ficiency and AS are Related Will Blow Your Mind
6 Things You Need to Know About Sjögren’s
Source: www.pixabay.com

6 Things You Need to Know About Sjögren’s

  • Post author:EmpatheticBadass
  • Post published:August 5, 2016
  • Post category:Rare Disease/Sjogren's Syndrome

Q: What does an autoimmune disease that primarily affects tear glands and salivary glands have in common with a James Clavell novel? A: Nothing, really—other than the fact that the…

Continue Reading 6 Things You Need to Know About Sjögren’s
incursión de la policía este puesto de limonada, termina mejor de lo que piensas
Pixabay

incursión de la policía este puesto de limonada, termina mejor de lo que piensas

  • Post author:Patient Worthy Contributor
  • Post published:August 5, 2016
  • Post category:Cystinosis/Rare Disease

Jake Krahe, un joven de Montville Township, Ohio, ha estado viviendo con una enfermedad rara desde que tenía 19 meses de edad informa 19 action news.  El diagnóstico específico es la…

Continue Reading incursión de la policía este puesto de limonada, termina mejor de lo que piensas

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