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Daily Archives: August 17, 2016

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A Life Interrupted and a Mystery Solved

A Life Interrupted and a Mystery Solved

  • Post author:Patient Worthy Contributor
  • Post published:August 17, 2016
  • Post category:Rare Disease/Sarcoidosis

Patient Worthy had the privilege of speaking with Vicky, who shared her story of being diagnosed and living with sarcoidosis. My case was outside the ‘normal’ perimeters because I was…

Continue Reading A Life Interrupted and a Mystery Solved
You’ll Be Amazed at the Support Groups Available to You

You’ll Be Amazed at the Support Groups Available to You

  • Post author:Erica Zahn
  • Post published:August 17, 2016
  • Post category:Cushing Disease/Rare Disease

If you have a rare disease, you probably have days when you think: "I wish I had someone to talk to or email back-and-forth with... someone who understands exactly how I…

Continue Reading You’ll Be Amazed at the Support Groups Available to You
Ways To Raise Awareness – Portraits of IPF

Ways To Raise Awareness – Portraits of IPF

  • Post author:Kristen Lord
  • Post published:August 17, 2016
  • Post category:IPF/Rare Disease

Idiopathic Pulmonary Fibrosis or IPF is a disease where the tissue in the lungs becomes scarred and stiff, making it harder for a person to breathe and preventing the lungs from properly…

Continue Reading Ways To Raise Awareness – Portraits of IPF
What Opportunities Has Acromegaly Created for You?
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What Opportunities Has Acromegaly Created for You?

  • Post author:James Ernest Cassady
  • Post published:August 17, 2016
  • Post category:Acromegaly/Rare Disease

It's easy to identify the times when a medical condition works against us. In the case of acromegaly, people may experience: fatigue, muscle weakness, severe pain, limited mobility, impaired vision,…

Continue Reading What Opportunities Has Acromegaly Created for You?
Will This RDEB Treatment Be The One That Takes to the Skies?
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Will This RDEB Treatment Be The One That Takes to the Skies?

  • Post author:Ronald Ledsen
  • Post published:August 17, 2016
  • Post category:Epidermolysis Bullosa/Rare Disease

It’s always awesome to announce a new clinical trial, especially for something that could offer relief to people suffering from the rarest of the rare conditions. And rare doesn’t begin…

Continue Reading Will This RDEB Treatment Be The One That Takes to the Skies?
La dieta de esta niña te hará desear que tuvieras una enfermedad rara
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La dieta de esta niña te hará desear que tuvieras una enfermedad rara

  • Post author:Patient Worthy Contributor
  • Post published:August 17, 2016
  • Post category:GLUT1 DS/Rare Disease

Si su médico le ha dicho que se podía comer pizza, carne y otros alimentos ricos en grasa al día es probable que registrarse para que la prescripción inmediatamente. Pero…

Continue Reading La dieta de esta niña te hará desear que tuvieras una enfermedad rara

Featured


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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


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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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