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Limited in Childhood, Watch Her Be Extraordinary Anyway
A flashmob broke out during the 2014 Walk. Source: Facebook

Limited in Childhood, Watch Her Be Extraordinary Anyway

  • Post author:Patient Worthy Contributor
  • Post published:June 8, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Your average American probably thinks of middle-aged adults or the elderly when they hear the word arthritis. The sad thing is you really can't blame them. Take this commercial from…

Continue Reading Limited in Childhood, Watch Her Be Extraordinary Anyway

10 Shocking Things Cheaper Than Your HAE Drugs

  • Post author:PW Blogger
  • Post published:June 8, 2015
  • Post category:HAE/Rare Disease

In a recent study published by Prime Therapeutics, the company reported that the annual cost of treatment to an HAE patient is over $300,000. We wanted to illustrate the ridiculous…

Continue Reading 10 Shocking Things Cheaper Than Your HAE Drugs
Still no diagnosis? Could Watson be the answer?

Still no diagnosis? Could Watson be the answer?

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:Rare Disease

Ahh the age of machines, yep we're in it. Technology has taken over. A few decades ago, when someone talked about technology, you thought about Orwell's novel 1984, science fiction movies about machines and artificial intelligence…

Continue Reading Still no diagnosis? Could Watson be the answer?
NOMID: a.k.a. CINCA
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NOMID: a.k.a. CINCA

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

No, not cinco. "CINCA"! CINCA stands for chronic infantile neurological cutaneous articular syndrome. NOMID stands for Neonatal Onset Multisystem Inflammatory Disease. So is CINCA really the same thing as NOMID?…

Continue Reading NOMID: a.k.a. CINCA
Pfizer Bids For Swedish Maker of Treatment for NOMID

Pfizer Bids For Swedish Maker of Treatment for NOMID

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:CAPS/Neonatal onset multisystem inflammatory disease/Rare Disease

Looks like Pfizer wants to buy a Swedish company who provides a treatment for neonatal-onset multisystem inflammatory disease, (NOMID). NOMID belongs to a family of conditions known as Cryopyrin-Associated Periodic…

Continue Reading Pfizer Bids For Swedish Maker of Treatment for NOMID
Doctor Said Crazy, Her Willpower Knew Better

Doctor Said Crazy, Her Willpower Knew Better

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:HAE/Rare Disease

Meet the Attwood family. Out of the 8 family members present, 4 of them are living with Hereditary Angioedema. The heart of the family is led by a strong women…

Continue Reading Doctor Said Crazy, Her Willpower Knew Better

“Have it your way” – your CVID treatment

  • Post author:Patient Worthy Contributor
  • Post published:June 5, 2015
  • Post category:CVID/Rare Disease

Just because Burger King ditched "have it your way" as a slogan doesn't mean you have to! Once diagnosed, living with Common Variable Immunodeficiency (CVID) requires lifetime infusion treatment. The pillar of treatment…

Continue Reading “Have it your way” – your CVID treatment

5 Hilarious Tweets From Ankylosing Spondylitis Patients You Can Relate To

  • Post author:Patient Worthy Contributor
  • Post published:June 4, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Ankylosing Spondylitis is no joke. It is a serious condition that can cause a lot of pain. You wouldn't guess it from these twitter users who are making light of…

Continue Reading 5 Hilarious Tweets From Ankylosing Spondylitis Patients You Can Relate To
Hands Speak Louder Than Words in Rare Disease Video
Photo Credit: rarediseaseday.org logo

Hands Speak Louder Than Words in Rare Disease Video

  • Post author:Patient Worthy Contributor
  • Post published:May 19, 2015
  • Post category:Rare Disease

Helping hands can do truly amazing things. Eurodis, the champions of Rare Disease Day, displays that in their 2015 Rare Disease Day theme video. https://www.youtube.com/embed/zQIeiQ7S6tQ   Started with a cause…

Continue Reading Hands Speak Louder Than Words in Rare Disease Video
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Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
Read Full Story Here
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