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Hi Reader,

At some point in life, we are either the patient or the caregiver. It’s intrinsically part of the human story. And in those moments, I want to be here for you.

Rare Disease Girl is a reader-supported digital atlas for navigating life’s inevitable challenges: personal memoir, illness, parenthood, and health systems.

It’s incredibly difficult to face the truths of our impermanence. But facing these truths, opens up a new level of joy, gratefulness, and love.

I went through an incredible ordeal and, spoiler alert, I’m still here. I hope the writings serve as a resource for you, providing practical tools, but also a window into these challenges from someone who has lived it… and is here to tell the tale. Perhaps between these words, you are seen.

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I also send subscriber-only exclusive update emails you don’t get on the site alone.

But also it’s incredibly encouraging for me, so if you enjoy what you read here, your subscription means a lot to me. It’s my love language.

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You’ll get access to special subscriber only posts as well as all the archives, but also, aside from telling my story, I try to share tools to help folks in times of stress. I’ll always make those posts free. Your contribution helps me make time for research, writing, and posting.

Paid subscribers are the fuel that keeps me posting. Even on hard weeks.

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…and let me know a little about you and what resonates with you! Tell me where you’re reading from. xo