Challenges of Managing NF1-Related Plexiform Neurofibromas (NF1-PN)

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? In collaboration with Springworks Therapeutics, we 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! 

NF Midwest and our Executive Director, Diana Haberkamp, are proud to have supported this project by helping researchers connect with the NF community and by providing input and editorial guidance during the development of the paper.