Why subscribe?

Hi Reader,

At some point in life, we are either the patient or the caregiver. It’s intrinsically part of what it is to be human. 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.

Subscribe to get full access to the newsletter and website. Never miss an update. 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 access to 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.

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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