The Washington University Clinical Programs at St. Louis Children’s Hospital and Barnes-Jewish Hospital is an internationally-renowned program specifically designed to provide multidisciplinary care for children and adults with NF, bringing together dedicated specialists
with extensive experience in NF. With experts in fields as diverse as dermatology, neurology, neurosurgery, orthopedics, oncology, neuropsychology, and endocrinology, these healthcare professionals are able to provide cutting-edge treatments for every facet of NF.

NF1 Clinical Program

NF experts, directed by David H. Gutmann, MD, PhD, provide detailed patient assessments while working with referring physicians, allied health professionals, and agencies to deliver cutting-edge medical services both locally and nationally. Our team-based approach leverages the expertise of NF experts (Dr. Gutmann, Sheel Pathak, MD, Erika Ramirez, BSN, RN, and Madeline Scherr, MS, OTR/L), dedicated NF subspecialists (Amy Armstrong, MD, Nicole M. Brossier, MD-PhD, Angela C. Hirbe, MD-PhD, Omar Butt, MD-PhD, Christopher Ray, MD) and numerous other clinical practitioners in therapy services, neuropsychology, neurosurgery, neuro-ophthalmology, neuropathology, orthopedics, plastic surgery, and genetics to treat NF patients of all ages.

Adolescent and Young Adult (AYA) Clinical Program

One of the major hurdles for our young adults is transitioning their care to the adult hospital. In order to facilitate this transition and to provide resources for our teenagers, we have established a three-pronged approach. This includes an active survey-based clinical study to define the needs of our young adults, the institution of a stepwise plan, beginning at 14 years of age to define annual goals towards medical care independence, and providing overlapping transition visits between pediatric and adult providers.

Schwannomatosis Clinical Program

Individuals with Neurofibromatosis Type 2-Schwannomatosis (NF2-Schwannomatosis) and Schwannomatosis  can benefit from the midwest’s only program specializing in NF2-SWN / SWN patient care – the Washington University NF2-Schwannomatosis / Schwannomatosis Clinical Program. This program is a joint project of the Washington University NF Center and the Alvin J. Siteman Cancer Center at Barnes-Jewish Hospital and Washington University School of Medicine.

Individuals with NF2-Schwannomatosis / Schwannomatosis are currently cared for by Greg Zipfel, MD, Albert Kim, MD-PhD, Craig A. Buchman, MD, and Omar Butt MD-PhD. Their collective experience in treating large numbers of patients with this uncommon disease galvanized the assembly of this team of experts aimed at providing specialized care tailored to patients diagnosed with NF2-Schwannomatosis / Schwannomatosis.

A dedicated group of physicians and other health care professionals from a broad spectrum of medical specialties — including neurosurgery, otolaryngology, neurology, medical oncology, radiation oncology, neuroradiology, plastic and reconstructive surgery, audiology, neuro-ophthalmology, anesthesiology (pain management), physical therapy, and social work — coordinate patient assessments and provide treatment with a comprehensive approach.

View the Schwannomatosis Clinical Program brochure (pdf) to learn more about this program.