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Share Your Story

Your journey matters. Help us build a supportive community and raise awareness by sharing your CADASIL experience with the world.

Your Voice Makes a Difference

Although CADASIL is a rare disease, it's important for those who are affected to know that they are not enduring alone. We strive to bring greater awareness and build a supportive community for patients and their families on their journey with CADASIL — and you can help by sharing your story.

Whether you are a patient, caregiver, family member, or friend, your experience is valuable. Every story shared helps others feel less isolated, educates the medical community, and drives momentum toward a cure.

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Build Community Connect with others who understand the CADASIL journey firsthand.
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Raise Awareness Help educate the public and medical professionals about CADASIL.
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Inspire Research Patient stories inform researchers and guide our advocacy priorities.
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Give Hope Your words may be exactly what a newly diagnosed family needs to hear.
Submit Your Story

✅ Thank you for sharing!

We've received your story and will review it shortly. If we have any questions, we'll reach out using the contact information you provided. Stories that are approved may be featured on the cureCADASIL Patient Stories page.

You may use initials or leave blank to remain partially anonymous.
We'll use this only to follow up, if needed. Never shared publicly.
There is no minimum or maximum length. Write as much or as little as feels right.
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Click to upload a photo JPG, PNG, or WEBP · Max 5 MB
A photo is optional. If provided, it may appear alongside your story on our website.
Privacy: Your email address is never displayed publicly. We review all submissions before publishing. Submitting a story does not guarantee it will be featured on our website.
Stories from the CADASIL Community

Here are a few voices from our community. Read all patient stories →

Living with CADASIL has changed how I see time. Every good day is a gift. Connecting with others through cureCADASIL helped me realize I'm not alone in this fight.
— Sarah M. · Patient, Minnesota
As a caregiver for my husband, I desperately needed a community that understood what we were going through. Sharing our story was one of the most healing things we've done.
— Karen L. · Caregiver, Ohio
When my mother was diagnosed, we had never heard of CADASIL. Finding cureCADASIL and reading others' stories gave us hope and helped us ask better questions of her doctors.
— David R. · Family Member, Texas