I Wish I Could Participate in the My NF Guide Research Study - Neurofibromatosis Midwest

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I Wish I Could Participate in the My NF Guide Research Study

I Wish I Could Participate in the My NF Guide Research Study

Posted By Karissa Haberkamp | On August 8th, 2025

Help Improve NF1 Care!
Even Your Own Right Now!
Participants Needed!

I’m lucky to be able to go to an NF clinic, but if I weren’t, I would definitely join this study. Why? Because I would get informational letters to bring to my next doctor’s visit. I’d only need to complete two online surveys and a Zoom interview. And as a bonus, I could also receive $150 for participating.

If you…

Don’t go to an NF clinic, especially one from an official NF Clinic Network
Are 18 or older (or the parent or guardian of a child with NF1)
Speak English or Spanish
Live in the U.S. or U.S. territories

….you may be eligible to participate.

This study aims to improve tools and resources for doctors, making NF1 care more effective so patients and providers can focus on health, not hurdles.

Want to learn more? See the info below or go through the pre-screening process!

PRE-SCREENING REGISTRATION

INFORMATIONAL WEBSITE

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