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Daily Archives: April 3, 2017

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April is Sjogren’s Awareness Month!
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April is Sjogren’s Awareness Month!

  • Post author:Nia
  • Post published:April 3, 2017
  • Post category:Rare Disease/Sjogren's Syndrome/Timely

The Sjogren's Syndrome Foundation wants to spread awareness on this condition. The Foundation, alongside its members and volunteers, wants to use its platform to educate people about the Sjogren's syndrome.…

Continue Reading April is Sjogren’s Awareness Month!
Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing
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Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing

  • Post author:Nia
  • Post published:April 3, 2017
  • Post category:Rare Disease/Timely/Tuberous Sclerosis Complex

The On Tap for TS event is Saturday April 1, 2017 from 4 - 8 pm to benefit tuberous sclerosis complex (TSC) and autism research. It will be at BadWolf…

Continue Reading Tuberous Sclerosis and Autism Event April 1 at BadWolf Brewing
Duchenne Muscular Dystrophy Clinical Trial of Respiratory Function
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Duchenne Muscular Dystrophy Clinical Trial of Respiratory Function

  • Post author:Patient Worthy Contributor
  • Post published:April 3, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

A clinical trial is up for those suffering from Duchenne Muscular Dystrophy. An oral tablet called Idebenone will be compared to a placebo, to see if it is safe and…

Continue Reading Duchenne Muscular Dystrophy Clinical Trial of Respiratory Function
Upcoming Free MDS Forum

Upcoming Free MDS Forum

  • Post author:Rebekah
  • Post published:April 3, 2017
  • Post category:Myelodysplastic syndromes/Rare Disease

Upcoming event made possible by the MDS Foundation! Whether you are a newly diagnosed patient, a long-term survivor, or a caregiver, this event will give you the opportunity to learn…

Continue Reading Upcoming Free MDS Forum
The PI Low Down: What You Need to Know
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The PI Low Down: What You Need to Know

  • Post author:Alexa Lee
  • Post published:April 3, 2017
  • Post category:Primary Immunodeficiencies/Rare Disease

In reading about various diseases, I sometimes find that the content reads like alphabet soup. Sometimes, it’s helpful to simplify and clarify. To get down to the basics. April is…

Continue Reading The PI Low Down: What You Need to Know

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