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Daily Archives: May 11, 2016

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Here’s How to Understand Hemophilia Through Powerful Myths!

Here’s How to Understand Hemophilia Through Powerful Myths!

  • Post author:Alisha Stone
  • Post published:May 11, 2016
  • Post category:Hemophilia B

I recently read an interesting article about a new drug for hemophilia B called: Idelvion [Coagulation Factor IX (Recombinant), Albumin Fusion Protein] which I highly recommend that you read. It…

Continue Reading Here’s How to Understand Hemophilia Through Powerful Myths!
5 personas notables que fueron diagnosticadas con espondilitis anquilosante

5 personas notables que fueron diagnosticadas con espondilitis anquilosante

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

1. Leonard Trask Trask sufrió un incidente de equitación terrible cuando tenia unos 20 años que condujo a la inmovilidad y la deformación de su columna vertebral. Él entregó su vida…

Continue Reading 5 personas notables que fueron diagnosticadas con espondilitis anquilosante
Meme – #CureCVID

Meme – #CureCVID

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:CVID/Rare Disease

Continue Reading Meme – #CureCVID
Faith and Courage Help This Israeli Face Behcet’s
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Faith and Courage Help This Israeli Face Behcet’s

  • Post author:Ronald Ledsen
  • Post published:May 11, 2016
  • Post category:Behçet's/Rare Disease

“Courage” is an adjective people throw around with relative ease to describe people and decisions that are not really courageous: A politician who vouches for a bill that may cost…

Continue Reading Faith and Courage Help This Israeli Face Behcet’s
If Full Time Moms Are Paid In Love, What Do Rare Moms Get?

If Full Time Moms Are Paid In Love, What Do Rare Moms Get?

  • Post author:Kristen Lord
  • Post published:May 11, 2016
  • Post category:Rare Disease

"Being a full-time mother is one of the highest salaried jobs... since the payment is pure love" -Mildred B. Vermont Mom's always have a lot on their plates. A mom…

Continue Reading If Full Time Moms Are Paid In Love, What Do Rare Moms Get?
Have You Signed Up for 14 Days of Wellness Challenge? It’s That Simple!

Have You Signed Up for 14 Days of Wellness Challenge? It’s That Simple!

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Starting June 13th, better health will be delivered right to your e-mail front door - if you sign up! Seriously, 14 days of small, easy changes that result in a…

Continue Reading Have You Signed Up for 14 Days of Wellness Challenge? It’s That Simple!
News Alert: Breakthrough Cutting-Edge Lyme Disease Treatment Is Here!
geralt / Pixabay

News Alert: Breakthrough Cutting-Edge Lyme Disease Treatment Is Here!

  • Post author:Alisha Stone
  • Post published:May 11, 2016
  • Post category:Lyme Disease/Rare Disease

Could it be? Could it REALLY be true? A breakthrough treatment for Lyme disease is here?! Well, according to what I read on the PR Newswire, it is. A specialty…

Continue Reading News Alert: Breakthrough Cutting-Edge Lyme Disease Treatment Is Here!
Students Raise Money, Awareness, and Empathy for Rare Diseases

Students Raise Money, Awareness, and Empathy for Rare Diseases

  • Post author:Erica Zahn
  • Post published:May 11, 2016
  • Post category:Rare Disease/Tyrosinemia

Students at North Carolina State aren’t letting the grass grow beneath their feet, knowing their feet can make a difference in a sick child’s life. At a recent dance marathon…

Continue Reading Students Raise Money, Awareness, and Empathy for Rare Diseases
Rare Moms: What Bed Time Story Conquers These Monsters?

Rare Moms: What Bed Time Story Conquers These Monsters?

  • Post author:Kristen Lord
  • Post published:May 11, 2016
  • Post category:Rare Disease

Being a rare mom is a nightmare. You never expected to have to tell your child that they have something that you can't fix. You always thought that you'd be…

Continue Reading Rare Moms: What Bed Time Story Conquers These Monsters?
Rare Mom: Tyrosinemia Tribulations

Rare Mom: Tyrosinemia Tribulations

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Tyrosinemia

As a mom to a child with a rare disorder I face many challenges everyday. My son's disorder requires me to weigh everything he eats and account for it, give…

Continue Reading Rare Mom: Tyrosinemia Tribulations
Meme Motivation – Be Proud of Your Scars

Meme Motivation – Be Proud of Your Scars

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Rare Disease

Continue Reading Meme Motivation – Be Proud of Your Scars
If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!

  • Post author:Alisha Stone
  • Post published:May 11, 2016
  • Post category:mastocytosis/Rare Disease

What’s it going to take before an effective treatment gets approved by the FDA for acute and aggressive mastocytosis? Well, hopefully the mastocytosis community won’t have to wait too long! In…

Continue Reading If Happiness Is Being Mother to Twins, Here’s How AML and Mastocytosis Are Conjoined!
Rare Moms: The Center Of THEIR Universe

Rare Moms: The Center Of THEIR Universe

  • Post author:Kristen Lord
  • Post published:May 11, 2016
  • Post category:Rare Disease

"The Natural State of motherhood is unselfishness. when you become a mother, you are no longer the center of your own universe. your RELINQUISH that position to your children." -…

Continue Reading Rare Moms: The Center Of THEIR Universe
Lyme Gave Me a New Appreciation for “Scrubs”

Lyme Gave Me a New Appreciation for “Scrubs”

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Lyme Disease/Rare Disease

You never get warned about how boring being sick is. And when I was on treatment for chronic Lyme last year, that's exactly what is was. And also excruciating, pathetic,…

Continue Reading Lyme Gave Me a New Appreciation for “Scrubs”
3 Stops to Increasing Will Power – Hope, Faith, Courage

3 Stops to Increasing Will Power – Hope, Faith, Courage

  • Post author:Patient Worthy Contributor
  • Post published:May 11, 2016
  • Post category:Rare Disease

Continue Reading 3 Stops to Increasing Will Power – Hope, Faith, Courage

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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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