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Daily Archives: May 26, 2016

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NOMI alias CINCA
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NOMI alias CINCA

  • Post author:Patient Worthy Contributor
  • Post published:May 26, 2016
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

No, no es cinco. "CINCA"! CINCA significa síndrome articular cutánea infantil neurológico crónico. NOMI es sinónimo de enfermedad inflamatoria multisistémica Neonatal. Así es CINCA realmente lo mismo que NOMI? De…

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Doctors Keep Missing this Debilitating Diagnosis… Why?
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Doctors Keep Missing this Debilitating Diagnosis… Why?

  • Post author:Erica Zahn
  • Post published:May 26, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Joel is like a lot of people. For two years, he suffered from back pain that was resistant to treatment. He had physical therapy, medications, and was placed in traction--to…

Continue Reading Doctors Keep Missing this Debilitating Diagnosis… Why?
Why Important Research Is Being Sold To The Highest Bidder

Why Important Research Is Being Sold To The Highest Bidder

  • Post author:Farrah Fontaine
  • Post published:May 26, 2016
  • Post category:Cystinosis/Rare Disease

Wanting to learn more is a common desire for many people with a rare disease, and researching online is probably the most common way people do that! Naturally, we're always looking for…

Continue Reading Why Important Research Is Being Sold To The Highest Bidder
What You Need to Know About Cystic Fibrosis

What You Need to Know About Cystic Fibrosis

  • Post author:Patient Worthy Contributor
  • Post published:May 26, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Patient Worthy's UK Partner Breath With Me Strawfie Challenge, wants you to know the basics about cystic fibrosis (CF) and how it affects patients and their families. So they made a rockin'…

Continue Reading What You Need to Know About Cystic Fibrosis
You’ll Never Guess What Might Impact Cystic Fibrosis Progress in Children

You’ll Never Guess What Might Impact Cystic Fibrosis Progress in Children

  • Post author:Ronald Ledsen
  • Post published:May 26, 2016
  • Post category:Cystic Fibrosis

Most parents spend at least part of their parenting life wondering, “What will I do today that permanently screws up my kid in the future?!” Which to be honest, is…

Continue Reading You’ll Never Guess What Might Impact Cystic Fibrosis Progress in Children
A Short Poem For Rare Awareness

A Short Poem For Rare Awareness

  • Post author:Kristen Lord
  • Post published:May 26, 2016
  • Post category:Rare Disease

One of the truest ways to help those with rare diseases is to make people aware of them. The more people who are aware, then more people can donate. The more…

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Huntington’s Has No Cure, But There is Help Available

Huntington’s Has No Cure, But There is Help Available

  • Post author:Erica Zahn
  • Post published:May 26, 2016
  • Post category:Huntington's disease/Rare Disease

A recent study at the University of Edinburgh in Scotland is showing results that link genetics to certain forms of mental illness. Briefly mentioned was the fact that, although the…

Continue Reading Huntington’s Has No Cure, But There is Help Available
Rapid Response is the Best Response for Fighting MDS

Rapid Response is the Best Response for Fighting MDS

  • Post author:Ronald Ledsen
  • Post published:May 26, 2016
  • Post category:Myelodysplastic syndromes/Rare Disease/Timely

In the ongoing fight against cancer and all its various forms and permutations, all doctors can agree that a timely diagnosis is critical to successfully slowing or halting the spread…

Continue Reading Rapid Response is the Best Response for Fighting MDS

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