Blog: Brave Enough To Be Rare
Updates on Our Advocacy & Support Efforts
Rare, Real & Resilient
A rare disease diagnosis can be isolating and lonely. Sometimes, you just need to know you are not alone. The Rare Disease Community has a spectrum of experiences that is as diverse and varied as the colors in the rainbow. Welcome to BRAVE ENOUGH TO BE RARE, a blog acknowledging, celebrating, and supporting the experiences and perspectives of the leukodystrophy and wider rare disease community.
There is Before & There is After – There is No In Between
Most days, I look in the mirror, and I don’t recognize who I see. I stare at the reflection but am unfamiliar with this new person. I often wonder who she will become. Whatever that looks like, I have not reached that destination. But ...
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