Showyourstripes

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    Rare Disease Advocacy & Collaborating

    Yesterday I spent the day on Capitol Hill with rare disease advocates from my state, as part of Rare Disease Legislative Advocacy week through Every Life Foundation. I have been part of the rare disease community since birth, and have a rare disease that has a strong organizing body. As a result, I wasn’t fully aware of the collective voices of so many others that have done tremendous work that I have benefitted from. Illness isn’t limited to certain communities; it crosses a diversity of racial, ethnic, political, religious and socioeconomic boundaries. We all do so much better when we work collaboratively on solutions that benefit all without focusing on our differences. #Bettertogether #RareDisease #Showyourstripes

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    Community Voices

    The amazing stories from The Mighty often resonate with me. Although I have Crohn's disease, the stories that tug at my heartstrings most are those about people with different abilities and particularly parenting a child with a disability. That became my life six years ago, and I'm excited to share our journey. Being rare doesn't mean you're alone. #MightyTogether