Neurofibromatosis Program

  • Jackson is just one of many patients we've treated. Read his story.

    Neurofibromatosis Program

    Jackson is just one of many patients we've treated. Read his story.

    Jackson is just one of many patients treated at our Neurofibromatosis Program. Read his story.

  • Comprehensive, Coordinated Care

    Patients with neurofibromatosis receive exceptional, comprehensive care at Cincinnati Children’s. Our Neurofibromatosis Program within the Cancer and Blood Diseases Institute is led by geneticists who work closely with oncologists and other specialists at Cincinnati Children’s to provide coordinated, expert diagnosis and treatment.

    The Neurofibromatosis Program at Cincinnati Children’s is one of the largest in the country. Our physicians follow more than 600 patients who have conditions such as:

    • Neurofibromatosis (including type 1 and type 2) 
    • Plexiform neurofibromas 
    • Malignant peripheral nerve sheath tumors 
    • Optic pathway gliomas

    Leadership in research is an essential component of our commitment to patients and families. Cincinnati Children’s physicians and researchers play an active role in many national and international research studies and develop their own innovative protocols. This research provides our patients with early access to new therapies, sometimes years before they become widely available.

    Cincinnati Children’s is one of only three hospitals in the country that is part of the Children’s Oncology Group Phase I Consortium, the New Approaches to Neuroblastoma Therapy Group, and the new Neurofibromatosis Clinical Research Consortium. Many of our physicians serve in leadership positions for these and other pediatric cancer organizations, further strengthening our link to the latest clinical research opportunities.

    Comprehensive, Multidisciplinary Team Approach

    Leading our team in the Neurofibromatosis Program are oncologists and genetic specialists who have extensive experience caring for neurofibromatosis patients and conducting clinical research. Other members of the team include physicians specializing in:

    New patients undergo a comprehensive evaluation in our clinic. Our team develops a detailed assessment and treatment recommendations. We provide referring physicians with regular updates to ensure coordinated care.

    Depending on the child’s needs, specialized care is available from experts in:

    Nursing Excellence

    Nurses play an integral role on the multidisciplinary team, providing patient care and extensive education. In fact, Cincinnati Children’s is known as a place of nursing excellence. In 2009, the medical center received Magnet status from the Commission on the Magnet Recognition Program. This is the gold standard for recognizing nursing excellence and collaboration among all care providers and patients. Of approximately 5,700 hospitals in the United States, only 6 percent have achieved this status from the Magnet Recognition Program.

 
  • Among the Best

    Our cancer program was rated No. 1 in the country in the 2013-14 list of Best Children’s Hospitals published by U.S. News & World Report.
    Our cancer program was rated No. 1 in the country in the 2013-14 list of Best Children’s Hospitals published by U.S. News & World Report.
    AWARDS AND RANKINGS