Daily Archives: November 3, 2016

Meme: Kindness = Strength

• Post author:Rebekah
• Post published:November 3, 2016
• Post category:Rare Disease
• Post comments:0 Comments

Don't let things as important as tenderness and compassion ever be mistaken for weakness or fragility!

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Show us your Gratitude Attitude!

• Post author:Kathy Devanny
• Post published:November 3, 2016
• Post category:Rare Disease
• Post comments:0 Comments

Sociologist Georg Simmel, calls Gratitude the “ moral memory of mankind”. But researchers tell us that gratitude is more than a moral or ethical acknowledgement of help of some kind.…

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Do YOU Know the Difference Between Cushing’s Disease and Syndrome?

• Post author:Alisha Stone
• Post published:November 3, 2016
• Post category:Cushing Disease/Rare Disease
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In my humble opinion, the Urology Care Foundation has set the standard when it comes to providing factual information about Cushing’s syndrome (CS). And if you or your loved one…

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The 2016 Presidential Campaign: An IPF Love Story

• Post author:Kiki Jones
• Post published:November 3, 2016
• Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease
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2016 has been a very bizarre, upsetting year. As an American, I can’t wait until I can bury most everything about 2016 in the back corner of the history books.…

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The Astonishing and Sad Reality of Butterfly Children

• Post author:Erica Zahn
• Post published:November 3, 2016
• Post category:Epidermolysis Bullosa
• Post comments:1 Comment

I always have a knee-jerk reaction that borders on anger when I read about babies who are dealt an unfair hand in the rare disease world. It seems incredibly unfair…

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CRPS Deals Out Breathtaking Pain, No One Knows Why

• Post author:Erica Zahn
• Post published:November 3, 2016
• Post category:Complex Regional Pain Syndrome/Rare Disease/Timely
• Post comments:0 Comments

Lora Rossi once had a vibrant, active life. She spent her summer days at the beach with friends, she had a job she really enjoyed, and her future looked bright.…

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Live Facebook Event Tonight! Discussions about Grief

• Post author:Rebekah
• Post published:November 3, 2016
• Post category:Rare Disease
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Author of Permission to Mourn, Tom Zuba, has developed  a new way to “do grief”.  His own personal losses of daughter, son, and wife have led him on the path…

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Fainting Is Not For The Faint Of Heart… Really.

• Post author:Erica Zahn
• Post published:November 3, 2016
• Post category:Dysautonomia
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Have you ever fainted? I have. Three times and all were related to receiving shocking news. The first time was when my grandmother unexpectedly passed away. The second time was…

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For Focal Dystonia, What is the “Golden Crown?”

• Post author:Sabina Kennedy
• Post published:November 3, 2016
• Post category:Dystonia
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Legend has it that Archimedes once ran through the streets of Syracuse naked yelling, “Eureka!” because he had discovered an amazing scientific principle. (BTW, if you're thinking, "What on earth…

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What Should You Know About Dystonia in Children?

• Post author:Sabina Kennedy
• Post published:November 3, 2016
• Post category:Dystonia/Rare Disease
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The days of summer are at a close. The temperature has finally dropped, and there’s a chill in the air. A new season is upon us. Finally! School is back…

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5 cosas perdidas con acromegalia (y cómo mejorarlos)

• Post author:Patient Worthy Contributor
• Post published:November 3, 2016
• Post category:Acromegaly/Rare Disease
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Cuando se tiene una enfermedad rara, las personas están obligados a darle la mirada. Usted sabe que el uno. Se dice: "Oh, bendita tu corazón; que ha perdido tanto ".…

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