Rare Disease Awareness

By Judy, FG syndrome type 1, United States, March 1, 2018

Representing Rare Awareness Day

Our group works for State of Missouri in Child Support Enforcement in Caruthersville Missouri.  We are representing a wide range of causes.  We are representing the following: Liver Cancer, Down syndrome, Autism, Aortic Dissection, Shwachman Diamond Syndrome, Asperger Syndrome, Osteogenesis  Imperfecta, Cauda Equina Syndrome, Metastatic Melanoma, Stroke, and FG Syndrome.

It was amazing to know about these different causes and the struggles each faces on a daily basis.  It has opened our eyes to the struggles that a person has with daily living.  

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Be part of Rare Disease Day by sharing your story with others and sending a message of solidarity! You can write about your story and also submit photos or a video testimonial.

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(To find the english name and more information about your disease, click here). Start typing the English name of your disease. Please choose from the suggestions that appear. If your disease is undiagnosed please write ‘undiagnosed’, or if you would like to list multiple diseases, please type in a list separated by commas.