Offered by: National Institutes of Health (NCI) Conducted by: Dr. Pamela Wolters
Recruiting for children (8-17) with NF1 and plexiform neurofibromas (pNFs) for a research study to complete pain questionnaires electronically over a two-week period from home.
Pediatric participants must also have a parent/caregiver willing to complete questionnaires as part of the study. Please email the study coordinator, Jayla Melvin, with any questions.
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
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
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