UIC Neurofibromatosis Clinic Recognized as ‘Specialty Clinic’ Within the NF Clinic Network
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In recognition of Neurofibromatosis (NF) Awareness Month, the University of Illinois Chicago is proud to highlight the continued growth of its comprehensive Neurofibromatosis Clinic, dedicated to providing lifelong, coordinated care for individuals with NF. The UIC Neurofibromatosis Clinic has recently been recognized as a Specialty Clinic within the NF Clinic Network, reflecting its commitment to high-quality, coordinated care. The program is also preparing to apply for designation as a Comprehensive NF Center, further advancing its mission to provide leading-edge clinical care and research opportunities.
Building on recent announcements from national and regional partners including the Children’s Tumor Foundation and NF Midwest, UIC has expanded its multidisciplinary approach to better serve both pediatric and adult patients with NF. This effort reflects a strong commitment to seamless transition of care across the lifespan—ensuring that patients receive specialized, continuous support from childhood through adulthood.
Currently, the clinic follows over 110 patients with NF1 and approximately 20 patients with schwannomatosis (including both NF2-related and non–NF2-related schwannomatosis), underscoring its growing role as a regional referral center for these complex and rare conditions. Neurofibromatosis and related disorders are uncommon, and schwannomatosis in particular is a very rare disease, making access to specialized, experienced care especially important for affected patients.
Importantly, the UIC Clinic is one of the few centers in the Chicago area that has established a structured system for transitioning patients from pediatric to adult NF care, addressing a well-recognized but often unmet need in the healthcare system. This coordinated transition model is critical, as continuity of specialized care is frequently difficult to find for patients with NF as they age out of pediatric services.
The UIC Neurofibromatosis Clinic brings together expertise from neuro-oncology, neurology, genetics, neurosurgery, dermatology, and other specialties to deliver personalized, patient-centered care. With a focus on both clinical excellence and research, the clinic aims to improve outcomes and quality of life for individuals living with NF.
The program is led by Dr. Stefania Maraka, Director of the Adult Neurofibromatosis Clinic at the UI Brain Tumor Center and assistant professor within the University of Illinois College of Medicine Department of Neurology and Rehabilitation, and Dr. Nikolas Mata-Machado, associate professor within the University of Illinois College of Medicine Department of Pediatrics and Co-Director and pediatric provider for patients with neurofibromatosis. Their respective specialties ensure comprehensive care across all age groups.
To schedule an appointment:
For adult patients with Neurofibromatosis
Phone: (312) 355-5285
Fax: (312) 996-8327
or place an EPIC referral order for AMB referral to neuro-oncology
For pediatric patients with Neurofibromatosis
Phone: (312) 996-7865
Fax: (312) 996-5372
or place an EPIC referral order for AMB referral to pediatric neurology