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/
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