42 Years of Care and Ensuring No One Fights Alone!

Study Needs Parents of Children Age 3 to 17 with NF1

Study: Looking for Caregivers of Children with NF1

Caregivers of children with NF1: Please, help us continue to make strides by participating in research!

With funding from NF Midwest and NF Upper Midwest, our research team at the University of Minnesota (the MIND Group) has been conducting studies to better understand the social and emotional development of children with NF1.

During the past year, we published two peer-reviewed research articles in the American Journal of Medical Genetics and the Journal of Neurodevelopmental Disorders. These studies will help physicians, educators and psychologists to better identify concerns and to provide appropriate educational and treatment approaches for children with NF1, especially those who experience challenges in managing emotions, developing relationships with peers, and regulating their attention and behavior.

We could not do this research without you!

Families who contribute to these research studies today will make a difference for children with NF1 of the future.

Importantly, we want to hear about not only challenges faced by children with NF1, but also their strengths.  Some of our more recent research is investigating new avenues to help children with NF1 and similar conditions build on their strengths. We hope that all caregivers of a child with NF1, including those both with AND without concerns related to behavioral health, will participate.

To support ongoing research, please see our study flyer about our NEW research study. Are you the parent/caregiver of a child with neurofibromatosis type 1 (NF1) between the ages of 3-17 years?  We want to hear from you! Please contact us to participate at:

Rene Pierpont, PhD, LP
Assistant Professor, Pediatric Neuropsychology
University of Minnesota

Study Flyer

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