Meme: Kindness = Strength

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

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

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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[Source: Pixabay.com]

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

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

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

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

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

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

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

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

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

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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