Active Studies

My NF Guide Study

You can make a difference in improving care for people with NF1. If you or your child has NF1 and haven’t visited an NF Clinic Network Clinic (NFCN) in the last twelve months, you may be eligible to participate in this important research study. The goal is to enhance the care that people with NF1 receive from their primary and other doctors.

This study needs approximately 360 people who do not currently have an NF doctor!

RESEARCH FLYER
PRE-SCREENING REGISTRATION

Help Improve NF1 Care

Your participation can lead to better healthcare experiences for the entire NF1 community. Find out more about this and other research opportunities.

Participate in Research

Recent Posts

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    Some journeys begin before a child can even walk. For Skylar, hers started at just 5 months old, when she broke her left leg. It would be the first of many chapters in a story defined not by hardship, but by an extraordinary spirit that refused to be held back.  A week after that initial... Read More
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  • Building Something Bigger: Christina’s Commitment to the Columbia Walk4NF

    In Columbia, Missouri, the Walk4NF has become something families count on each year. It’s where people show up, find each other, and realize they’re not the only ones navigating life with NF.  That kind of connection didn’t always exist for Christina.  Neurofibromatosis has been part of her family for generations. Her grandmother had it. Her father had it, along with several... Read More
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