Challenges of Managing NF1-Related Plexiform Neurofibromas

Author: David T. Miller, MD, PhD; Kim Bischoff; Diana Haberkamp; Kate Kelts, RN, BSN; Vanina Taliercio, MD; Annabelle Wilcox, PA-C; Tracy Wirtanen, MSW

Published On: 10/21/25

Understanding Perspectives of Patients and HCPs to Bridge Gaps and Optimize Care

Are you and your HCP often in agreement with your treatment plan for neurofibromatosis type 1 (NF1) or neurofibromatosis type 1 with plexiform neurofibromas (NF1-PN) or are there times when you feel misunderstood? Clear communication is key to a successful patient/caregiver and HCP relationship, but are there aspects of our care management that each of us can work to improve upon? The NF Network, in collaboration with Springworks Therapeutics, surveyed patients, caregivers, and HCPs about their perspectives on patient symptoms, the emotional and mental burden, approaches to treatment management, and unmet needs of NF1 and NF1-PN. Click the link here to discover patient/caregiver and HCP reactions! 

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