Today, I had the privilege of meeting with my mentor for the first time—through the Rare Disease Legislative Advocates Mentorship Program. This initiative is put together by the EveryLife Foundation.
Our meeting stirred something powerful within me. I’ve been brewing. I’ve been trying to find the push to begin my next passion project—and our conversation wasn’t just insightful; it was a reminder that dreams are worth pursuing, especially when they’re rooted in purpose—so that is exactly what I’m doing. I’m going full send into this project.
My mentor encouraged me to take actionable steps to shape this blog into a trusted resource for patients & families navigating rare & undiagnosed diseases. Her words reminded me—this doesn’t just have to be a dream.
One thing she said that really stuck with me:
“We’ll be working together for 12 months—so let’s start by imagining what this project could look like in one year—what do you want to see come out of this?”
Thoughts have been dancing in my mind ever since.
Here’s what I see:
A space that uplifts & amplifies the voices of rare & undiagnosed disease warriors—patients, parents, caregivers, siblings, & advocates—who long for connection, understanding, & resources.
A place to tell their stories—in their own words.
A hub that not only validates their experiences but connects them to the tools, communities, & support they may not have even known existed.
A place where readers can resonate with the stories they read & find useful links, therapies, & diagnosis codes that can help them communicate with their providers on their diagnostic odysseys in hopes of finding answers.
In so many ways, this isn’t a new dream—my dream is simply taking a new form.
For the past decade, I’ve built my corporate & professional career around helping others. Connecting others.
Whether it was moderating & facilitating employee resource groups, designing personal & professional development sessions, or working one-on-one with colleagues to navigate their goals—I’ve always found joy in asking:
“What do you need, where do you want to be—& how can I help you get there?”
I was especially proud to support DEIA efforts—leading monthly programming & creating safe spaces where people could be seen, heard, & supported. That role gave me a front-row seat to the power of connection & the life-changing impact of access to the right resource at the right time.
Access. Means. Everything.
Connection. Means. Everything.
Now, I get to do that same work in a space that feels incredibly personal.
I’m still building, dreaming, & sketching what this platform will ultimately become—but I know one thing for sure: this will be a blog built with heart. With love. With soul.
By someone in it—not just for rare disease patients, but for anyone connected to the rare disease community.
This is for advocacy, connection, storytelling, & hope.
If you or someone you love is living with a rare (or undiagnosed) condition, I would be honored to help share your story.
Whether it’s through a video call, a written piece, or just a conversation—we’re stronger together.
Your voice belongs here.
You belong here.
More to come soon, friends. & from the bottom of my heart—thank you for believing in this with me. 💙
— Lauren
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