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 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.
The NF Midwest Scholarship Program is proud to celebrate another year of supporting students with neurofibromatosis as they work toward their educational dreams. Each year, NF Midwest awards scholarships to students across our six-state region. These students are pursuing their goals while also navigating life with NF, and we are honored to play a small... Read More
Every treatment that exists today: every medication, every therapy, every breakthrough, started somewhere. It started with a question, a hypothesis, and eventually, a clinical trial. May 20 is National Clinical Trials Day, a moment to recognize the remarkable system that turns scientific ideas into real-world answers. For the NF community (patients, families, caregivers, and advocates)... Read More
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