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As a writer and author, I candidly share my journey living with a rare neurological disease through my blog, and soon, I will expand upon these experiences in a forthcoming book. There's an urgent need for medical professionals to expedite the diagnosis of rare diseases, as delays can harm patients significantly. More than this, I want people to feel listened to and believed. Just because we don't yet understand something, doesn't make it any less real. For to long, patients with rare conditions have been treated poorly and with little compassion. and I will work tirelessly to end this.

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