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Humans of Rare Disease 

This is

Your Space

Welcome to Humans of Rare Disease

This collaborative effort features people in the rare disease space: patients, advocates, researchers and healthcare professionals alike. We have encouraged them to share their stories and offer readers a window into their lives. Enjoy and share!

Check out our Rare Disease Community Below!


''My name is Michelle and I have an autoimmune neuromuscular disease called Stiff Person Syndrome. It’s a progressive disease that causes stiffness, and painful muscle spasms all throughout the body, with my legs and arms twisting and my feet contorting. I struggle with mobility, and often have trouble walking, but I’m on a treatment that helps! It took 7 years of painful episodes and frustrating hospitalizations to get a proper diagnosis and treatment. I went through a lot of trauma and pain in...

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Stiff Person Syndrome


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