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

  • Nothing to Fear: A Children’s Book on NF

    For young children with neurofibromatosis, medical appointments can feel big, unfamiliar, and sometimes scary. An eye exam, an MRI, a doctor’s visit, or even the mention of a needle can bring up questions that are hard for a small child to understand — especially between the ages of 3 and 7, when imagination is strong... Read More
    NF Midwest General

  • NF Awareness Month Reached Across Our Six-State Region 

    Thank you to everyone who helped raise awareness for neurofibromatosis (NF) during May!  This year, NF Midwest families and advocates helped bring NF Awareness Month into communities across our six-state region. Through state and local proclamations, more people had the opportunity to learn about neurofibromatosis and recognize the families who live with NF every day. ... Read More
    Jennifer Bulandr General

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