Let us explain ourselves:
If you have a child with a rare disease, or if you are a child with a rare disease, you are probably familiar with the struggles that come along with it.
We all know the struggle to find a diagnosis, the struggle to find a medication/treatment for our diseases, and the countless doctors visits that infringed on our social lives and school work. But, because of our unique but similar experiences with our rare diseases, we have invaluable knowledge and life lessons to share with one another. This website is meant to be an event space and socializing space for children with rare diseases and their parents, so that we can help one another, support one another, and be a community. We like to make little ones laugh, and we believe that educating kids on rare diseases and medical terms doesn't need to be scary. We want to make sure that children know that there are people in the same position as them that care about them, and that they aren't alone.
Our executive committee is comprised of teens that are affected by, or currently have, rare diseases. Our passion for this non-profit comes from our own experiences as children trying to understand our disorders, or the disorders of loved ones.
We chose a Zebra to be our mascot, because Zebra's are the mascots of rare diseases. The different stripes represent different diseases. It is meant to remind people with rare diseases that alone, we are just a stripe, but together we are strong.
Thank you so much for visiting our website and having an interest in our mission and community! We hope that you'll stick around and come to our first event! Details TBA.
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