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Daily Archives: August 16, 2016

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Would You Believe Something This Simple Can Change the World?
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Would You Believe Something This Simple Can Change the World?

  • Post author:Lady Kehveen Abernathy
  • Post published:August 16, 2016
  • Post category:IPF/Rare Disease

"From belonging to an healthiest elite organisation to being hit by a rare disease is a leap which is not easy to accept." What is it about stories? Why do…

Continue Reading Would You Believe Something This Simple Can Change the World?
The Challenge of Revealing a Narcolepsy Diagnosis

The Challenge of Revealing a Narcolepsy Diagnosis

  • Post author:James Ernest Cassady
  • Post published:August 16, 2016
  • Post category:Narcolepsy/Rare Disease

How would you feel if someone you love, someone you care about more than anything else in the world, needed brain surgery to remove a tumor and, right as that…

Continue Reading The Challenge of Revealing a Narcolepsy Diagnosis
Ways to Raise Awareness for IPF: #BlueUp4PF

Ways to Raise Awareness for IPF: #BlueUp4PF

  • Post author:Kristen Lord
  • Post published:August 16, 2016
  • Post category:IPF/Rare Disease

September is IPF Awareness month, I always love seeing the little things you can do to help raise awareness and involve anybody. I wish they could all go viral like…

Continue Reading Ways to Raise Awareness for IPF: #BlueUp4PF
When You Need Answers About Mycosis Fungoides, Look Here!

When You Need Answers About Mycosis Fungoides, Look Here!

  • Post author:Kiki Jones
  • Post published:August 16, 2016
  • Post category:mycosis fungoides/Rare Disease

When you’ve been diagnosed with a rare disease, it’s alarmingly common for your diagnoser to have just as many questions as you do… which is not comforting. Luckily, more resources…

Continue Reading When You Need Answers About Mycosis Fungoides, Look Here!
This Teacher Found Opportunities in Life with Acromegaly

This Teacher Found Opportunities in Life with Acromegaly

  • Post author:James Ernest Cassady
  • Post published:August 16, 2016
  • Post category:Acromegaly/Rare Disease

On March 13, 2016, the SunHerald of Gulfport, Mississippi, announced a contest: school choirs could audition to perform with the rock band Foreigner. And in addition to that opportunity, the chosen…

Continue Reading This Teacher Found Opportunities in Life with Acromegaly
How to Support EB in the Most Youthful Way Possible
Source: www.pixabay.com

How to Support EB in the Most Youthful Way Possible

  • Post author:Kiki Jones
  • Post published:August 16, 2016
  • Post category:Epidermolysis Bullosa/Rare Disease

Can I just tell you how I tired I am of all the millennial hate out there? People are beyond harsh to the younger generations, and this article on Heritage High…

Continue Reading How to Support EB in the Most Youthful Way Possible
Una exposición de arte viajara 6000 millas, He aquí por qué debería importarle

Una exposición de arte viajara 6000 millas, He aquí por qué debería importarle

  • Post author:Patient Worthy Contributor
  • Post published:August 16, 2016
  • Post category:Cystinosis/Rare Disease

Para una enfermedad que tiene tan poca atención prestada a ella, hay un buen número de personas que quieren llevarlo a la vanguardia en la forma de una exposición de…

Continue Reading Una exposición de arte viajara 6000 millas, He aquí por qué debería importarle

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