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Showing posts from January, 2018

ACMCRN's Arachnoiditis Review is out! Rare Disease, Arachnoiditis, Chronic Pain

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This week's ACMCRN Arachnoiditis Review is out!


Don't miss this week's amazing Top 5 articles!
Our featured videos are listed too! Here's the top video in this edition! PMB Clawback PSA by iPain - 90 sec https://youtu.be/YBQjIad_WJo

Welcome to Living (Well) With Rare Disease!

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Welcome to Living with Rare Disease!
by Lori Verton
Founder, ACMCRN
Rare Disease Warrior
There is a certain quality about the experience of living with a Rare Disease: a bit of an oxymoron in its character. By definition, a Rare Disease patient is one whose disease is found in less than 200 000 Americans (or about 1 in 1500) at any time. For those in Europe, the definition is similar at 1 in 2000 people, (See:https://www.rarediseaseday.org/article/what-is-a-rare-disease).For those of us with any one specific disease entity, indeed we are a rare bunch, The spinal cord disease that I deal with, Adhesive Arachnoiditis, falls under this definition. 

Paradoxically, when Rare Disease patients are gathered together, we are actually not that Rare at all! An estimated 350 million people globally are diagnosed with one of the over 6000 known types of Rare Disease. (For a list of all types recognized in EU, see here: https://rarediseases.org/for-patients-and-families/information-resources/rare-diseas…