Neurofibromatosis Type 1: Beyond Skin Findings, What Clinicians Need to Know

At the conclusion of this course, participants will be able to:

1. Evaluate the clinical features, diagnostic criteria, complication risks, and profession-specific red flags of Neurofibromatosis Type 1 (NF1), including findings that require medical, pharmacy, or dental referral.

2. Implement an age-staged, interdisciplinary monitoring approach for NF1 that incorporates neurologic, vascular, neurodevelopmental, medication-related, and oral health surveillance within each profession’s scope of practice.

3. Perform profession-specific responsibilities in team-based care for patients with NF1, including referral management, medication safety, medication-access workflows, patient counseling, oral health assessment, and long-term care transitions.

Healthcare professionals, including physicians, pharmacists, pharmacy technicians, nurses, and dental professionals, will learn how Neurofibromatosis type 1 (NF1) is recognized, monitored, and managed within an interdisciplinary care model and within each profession's scope of practice. The training focuses on moving from a reactive approach to a proactive, life-long monitoring model. The curriculum includes the 2021 revised diagnostic rules and provides clear paths for high-risk problems, such as brain tumors and aggressive nerve cancers. Providers will learn about the hidden risks of kidney-artery narrowing and brain-vessel disease, and they will gain skills in using standard screening tools for ADHD and planning problems. The training helps providers lead a multi-doctor medical home, makes specialty coordination easier, and helps patients move from pediatric to adult care safely, ensuring the best long-term health for patients and their families. The curriculum emphasizes interdisciplinary collaboration, highlighting how pharmacists contribute to medication safety and counseling, how pharmacy technicians support medication access, coordination, and adherence workflows under pharmacist supervision, and how dental professionals contribute to recognition of oral and craniofacial findings and referral for further evaluation.

A gap in NF1 care happens because the updated diagnostic rules are not always followed, and coordination between family doctors and special clinics is often fragmented. Many doctors recognize the skin spots, but the identification of hidden blood-vessel problems and the stress of long-term pain often lags behind the latest research. Furthermore, many providers need better training for the high-risk move from pediatric to adult services and need help with reproductive counseling for family planning. The gap is closed by focusing on a coordination plan that addresses nerve, heart, and mental health needs at the same time. By using the latest multi-doctor guidelines, the curriculum builds the skills needed to prevent permanent disability and improve long-term survival.