Closed Studies

My NF Guide Study (Closed)

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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    Offered by: University of Colorado AnschutzConducted by: Katelyn Glowinski, genetic counseling student, master’s program This research study is designed to gain a better understanding of healthcare barriers faced by adults with Neurofibromatosis Type 1 (NF1), as well as evaluate any associations between these barriers and your self-reported neuropsychiatric or mental health status. If you join... Read More
    Karissa Haberkamp Active Studies

  • Where Belonging Can Lead: Rachel’s Journey with NF Midwest 

    Rachel was 13 when she first attended Camp NF.  At an age when so much was changing, camp gave her something she deeply needed: the chance to meet other young people who understood life with NF.  “NF camp gave me the opportunity to connect with others who had a shared experience and come to understand... Read More
    Jennifer Bulandr General