The 20 Best Neurofibromatosis Doctors in Maryland, US

Dr. Jaishri Blakeley is the Marjorie Bloomberg Tiven Professor of Neurofibromatosis in Neurology, Oncology, and Neurosurgery at Johns Hopkins School of Medicine, director of the Johns Hopkins Comprehensive Neurofibromatosis Center and director of the Neurofibromatosis Therapeutic Acceleration Program (NTAP). She is an active clinician-scientist specializing in the care of people with NF1, NF2, LZTR1, SMARC1 schwannomatoses, and primary brain tumors. Her research expertise in the development of clinical trials for nervous system tumors and specifically, early clinical-translational studies including tumor pharmacokinetic and pharmacodynamic investigations, imaging biomarkers for rare nervous system tumors, and incorporation of patient-focused, functional endpoints into efficacy studies. She has been the national or international leader of 7 clinical trials focused on therapies for glioblastoma, NF1 and NF2. In 2012 she cofounded the NTAP to dramatically shift the landscape of NF1 via necessary, efficient, and expert discovery, translational and clinical research. NTAP focuses on therapeutics, fosters collaboration, facilitates open and timely sharing of results, and streamlines the research process to accelerate therapies for plexiform and cutaneous neurofibromas. Through NTAP, Dr. Blakeley has supported and collaborated with more than 80 laboratories and research teams across the globe enabling meaningful therapeutic development for NF1-associated neoplasms and supporting the development of an exceptional community of clinician scientists focused on NF1 via the Francis S. Collins Scholars Program in Neurofibromatosis Clinical and Translational Research. Her research and programmatic efforts are all in the service of improving outcomes for the patients with NF1, NF2, schwannomatosis, and primary brain cancer for whom she is honored to provide care. Dr. Blakeley is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis, Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis Type 1 (NF1), and Laminectomy.

Carlos Romo, M.D., is a neuro-oncologist in Baltimore, Maryland. Dr. Romo specializes in the diagnosis and treatment of brain tumors, including glioblastoma, astrocytomas, oligodendrogliomas, neurofibromas, and schwannomas among others. Dr. Romo earned his medical degree from the School of Medicine and Health Sciences at Tecnológico de Monterrey in Mexico and completed his Neurology residency at the University of Arkansas for Medical Sciences, where he served as chief resident. He then completed a Neuro-oncology clinical and research fellowship in a joint program between The Johns Hopkins University and the National Institutes of Health. Dr. Romo additionally trained as a clinical pharmacology fellow at The Johns Hopkins University and completed training on clinical cancer research at the University of Texas MD Anderson Cancer Center. In his research, Dr. Romo studies drug pharmacokinetics and the blood-brain barrier, and investigates better ways to reach tumors in the central nervous system. Dr. Romo also studies treatments for patient with neurofibromatosis. In addition to patient care and research, Dr. Romo teaches and mentors medical and undergraduate students to help develop a future generation of neurologists. Dr. Romo is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Schwannomatosis, and Astrocytoma.

Dr. Christine Pratilas is a pediatric medical oncologist at the Sidney Kimmel Comprehensive Cancer Center and Associate Professor of Oncology, Pediatrics & Cellular and Molecular Medicine at the Johns Hopkins University School of Medicine. She joined the Hopkins pediatric sarcoma team in 2014. Dr. Pratilas received her undergraduate degree in Biology from Drew University in New Jersey and her medical degree from UMDNJ - Robert Wood Johnson Medical School (now Rutgers University), where she also completed her internship and residency from 1999 to 2002. From 2002 to 2005 she was a fellow in hematology and oncology in the Memorial Sloan Kettering Cancer Center (MSKCC) Department of Pediatrics, and in the Department of Pediatric Hematology and Oncology at New York Weill Cornell Medical Center. She was a postdoctoral research fellow in Dr. Neal Rosen’s Molecular Oncogenesis Laboratory at MSKCC. From 2006 to 2014 she was attending in Pediatric Oncology at MSKCC, specializing in developmental therapeutics & sarcoma. She has been the director of the pediatric sarcoma program at Hopkins since 2018. Dr. Pratilas focuses her research on cancer-associated pathways and signal transduction, which involves figuring out how a cell’s internal molecular pathways work, and how those pathways can be molecularly controlled. This knowledge is the basis for developing promising new molecularly targeted cancer therapies, which is the focus of Dr. Pratilas’s research. Among her important scientific contributions is advancing our understanding of how certain proteins that can be mutated in cancer, known as RAF kinases (specifically BRAF), affect a cancer cell’s behavior. The research in Dr. Pratilas' laboratory is focused on RAS signal transduction pathways, concentrating on pediatric sarcomas such as rhabdomyosarcoma and malignant peripheral nerve sheath tumors, in order to develop novel therapeutics for children with these tumors. Dr. Pratilas is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Adult Soft Tissue Sarcoma, and Osteotomy.

Brigitte Widemann is a Hematologist and an Oncologist in Bethesda, Maryland. Dr. Widemann is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Malignant Peripheral Nerve Sheath Tumor, Adult Soft Tissue Sarcoma, and Thyroidectomy.

Miriam Bornhorst is a Hematologist and an Oncologist in Silver Spring, Maryland. Dr. Bornhorst is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Optic Glioma, and Glioma.

Dr. Allan Belzberg is a neurosurgeon specializing in surgery of the peripheral nervous system. As Director of Peripheral Nerve Surgery at Johns Hopkins in Baltimore, he treats tumors including schwannoma, neurofibroma and nerve sheath tumor. Dr. Belzberg performs surgical repair of nerve damage caused by trauma as well as neurosurgery on carpal tunnel, peroneal nerve and other peripheral nerve conditions. Dr. Belzberg also directs the Brachial Plexus and Peripheral Nerve Clinic at the Kennedy Krieger Institute and co-directs the Neurosurgery Pain Research Institute at Johns Hopkins Hospital. Dr. Belzberg currently sees patients at the Johns Hopkins Outpatient Center located in Baltimore on Wednesdays and the Green Spring Station location on Fridays. Dr. Belzberg is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Schwannomatosis, Neurofibromatosis, Thoracic Outlet Syndrome, Osteotomy, and Rhizotomy.

Dr. Ahlawat earned a Bachelor of Arts with magna cum laude at New York University. She completed both her Medical Degree as well as residency training in diagnostic radiology at Rutgers University’s Robert Wood Johnson Medical School in New Brunswick, NJ. Dr. Ahlawat completed her Pediatric Radiology Fellowship at the Children’s National Medical Center in Washington, DC and went on to Johns Hopkins University in Baltimore, MD to do a Fellowship in musculoskeletal radiology. After completion of her fellowship, Dr. Ahlawat joined as faculty in the Diagnostic Division of the department of Radiology at the Johns Hopkins University. Currently, she is an Assistant Professor in the Johns Hopkins University Department of Radiology and Radiological Science. Dr. Ahlawat’s expertise is Diagnostic Radiology with additional training in pediatric and musculoskeletal radiology. Dr. Ahlawat specializes in high resolution magnetic resonance (MR) imaging of peripheral nerves, specifically detection and characterization of peripheral nerve injury; MR imaging of peripheral nerve tumors and peripheral nerve tumor syndromes; whole body MR imaging in the setting of peripheral nerve tumor syndromes; and advanced MR techniques such as quantitative diffusion weighted imaging and apparent diffusion coefficient mapping in characterization of bone and soft tissue tumors. Dr. Shivani Ahlawat also serves as the Director of the Musculoskeletal Fellowship Program. Dr. Ahlawat is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Schwannomatosis, Neurofibromatosis, Neurofibromatosis Type 1 (NF1), and Undifferentiated Pleomorphic Sarcoma.

Dr. Laura M. Fayad serves as the Chief of Musculoskeletal Imaging. She is a Professor in the Johns Hopkins University Department of Radiology and Radiological Science, Department of Oncology, and Department of Orthopaedic Surgery. Dr. Fayad is also the Director of the Translational Research Program in the Department of Radiology. Dr. Fayad earned a Bachelor of Science at the Massachusetts Institute of Technology, a Master of Science at Stanford University, and M.D. C.M. degrees at the McGill University Faculty of Medicine. She completed residency training at Columbia University and MRI Fellowship at Thomas Jefferson University. She specializes in diagnostic and interventional musculoskeletal radiology. In addition to routine sports medicine and spine applications, Dr. Fayad protocols and interprets specialized examinations in the areas of peripheral nerve imaging, tumor imaging, and rheumatology. Her primary area of research focuses on novel imaging techniques for musculoskeletal tumors, with her work including well over 100 publications that have been cited more than 1,500 times. Dr. Fayad is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Schwannomatosis, Neurofibromatosis, Liposarcoma, and Neurofibromatosis Type 2 (NF2).

Stephanie Morris is a Pediatric Neurologist in Lutherville, Maryland. Dr. Morris is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Autism Spectrum Disorder, and Aphantasia.

Nurse practitioner Shannon Langmead specializes in neurofibromatosis and is the clinic coordinator of the Johns Hopkins Comprehensive Neurofibromatosis (NF) Center. She evaluates and manages patients with NF1, NF2 and Schwannomatosis. Her special interests include pain management and developing social support networks for patients who have NF. Shannon earned bachelor’s degrees in Spanish and nursing from Saint Francis University in Pennsylvania and Villa Julie College in Maryland, and completed her master’s degree in nursing at The Johns Hopkins University School of Nursing. She has worked as a bedside nurse in neurology and neurosurgery at The Johns Hopkins Hospital and as a part-time clinical faculty member for The Johns Hopkins University School of Nursing. Ms. Langmead is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis, RASopathies, Neurofibromatosis Type 1 (NF1), and Legius Syndrome.

Chad Gordon is a Plastic Surgeon in Baltimore, Maryland. Dr. Gordon is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Neurofibromatosis, Legius Syndrome, Neurofibromatosis Type 1 (NF1), Osteotomy, and Bone Graft.

Dr. Meyer will serve as the lead medical oncologist for adult sarcoma patients, and will focus on building the Adult Sarcoma and Connective Tissue Oncology Program. In collaboration with pediatric oncologist David Loeb, M.D., Ph.D., and orthopaedic surgeon Kristy Weber, M.D., Meyer will bring novel therapies to the clinic for sarcoma patients. Meyer received his bachelors and masters degrees in cell and molecular biology from Stanford University. From there, he joined the Medical Scientist Training Program at Baylor College of Medicine and earned his medical degree followed by a doctorate in immunology. Meyer completed his residency at the University of Maryland and served as chief resident in medicine from 2004-2005. Afterward, he joined our fellowship program in medical oncology and has been working in the laboratory of Jonathan Powell, M.D., Ph.D., on projects relating to the characterization of molecular regulatory pathways involved in T-cell activation and energy. As a third-year fellow, Meyer served as the chief fellow for our Training Programs in Hematology and Medical Oncology and he received a Young Investigator Award from the American Society of Clinical Oncology in 2010. Dr. Meyer is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Adult Soft Tissue Sarcoma, Rhabdomyosarcoma, Fibrosarcoma, Osteosarcoma, and Salpingo-Oophorectomy.

Maria Acosta is a Pediatric Neurologist in Silver Spring, Maryland. Dr. Acosta is rated as a Distinguished provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are GM1 Gangliosidosis, Neurofibromatosis, Sandhoff Disease, and Autism Spectrum Disorder.

Dominique Pichard is a Dermatologist in Silver Spring, Maryland. Dr. Pichard is rated as an Advanced provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Livedo Reticularis, and Graft Versus Host Disease (GvHD).

Dr. Kathryn Lemberg is an Assistant Professor of Oncology and Pediatrics at the Sidney Kimmel Comprehensive Cancer Center. Her research, conducted with Johns Hopkins Drug Discovery, focuses on tumor metabolism and the development of new metabolic inhibitors to treat cancer. She has investigated novel glutamine antagonists in preclinical models of RAS-driven solid tumors. She is also interested in the effects of tumor metabolism on patient growth and development. Dr. Lemberg completed pediatrics residency training at Johns Hopkins and pediatric hematology-oncology fellowship training in the joint Johns Hopkins/National Cancer Institute program. She received her M.D. and Ph.D. degrees from the Medical Scientist Training Program at Columbia University in New York, where her graduate research focused on ferroptosis, a novel oxidative cell death in cancer models. Dr. Lemberg sees pediatric and young adult sarcoma patients as part of the sarcoma team and has additional clinical focus on neurofibromatosis type I related solid tumors. Dr. Lemberg is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, and Adult Soft Tissue Sarcoma.

Chetan Bettegowda is the director of the Johns Hopkins Department of Neurosurgery. He offers comprehensive treatments for adult patients with benign and malignant brain tumors, specializing in the treatment of patients with primary brain tumors such as gliomas, meningiomas and pituitary tumors. He performs both open surgery and stereotactic radiosurgery for patients with metastatic tumors to the brain, and also provides stereotactic radiosurgery for other neurological disorders, including spinal tumors, trigeminal neuralgia and skull-base tumors. Dr. Bettegowda is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Trigeminal Neuralgia, Astrocytoma, Glioblastoma, Rhizotomy, and Microvascular Decompression.

Dr. Fisher is an associate professor of plastic surgery in the Johns Hopkins Department of Plastic Surgery. His areas of clinical expertise include burn surgery, burn reconstruction, craniofacial surgery, and reconstructive microsurgery. He serves as the Director of the Johns Hopkins Bayview Adult Burn Center. Committed to acute and reconstructive burn care of the highest quality, Dr. Fisher completed extensive training at multiple leading centers. These included a Burn Fellowship at the Shriners Hospital for Burns in Galveston, a Plastic Surgery Residency at Duke University, a Craniofacial Fellowship at the Hospital for Sick Children in Toronto, and a research fellowship at Harvard. Throughout his career Dr. Fisher has brought the full breadth and depth of his training to care for patients with the most complex injuries and deformities. From 2014 to 2022 he was on the faculty of the University of Iowa where he served in the burn unit, led the craniofacial team, and served the hand trauma team. Recognizing that complex injuries need coordinated care, he developed the Complex Face Group at Iowa to coordinate multiple specialty collaboration. Burns cause disfigurement, disability, and death particularly among the poor in the US and across the globe. Dr. Fisher’s research interests include improving prevention wherever burns happen, improving acute and reconstructive outcomes, and strengthening healthcare systems in the US and abroad in the face of burn and other disasters. His research interests also include wound healing and scar for burns and trauma. He has been a national and international leader in burn care. He founded and chaired the American Burn Association Committee on Reconstruction. He also founded and continues to lead the ABA series of burn reconstruction courses. He is frequently invited to speak internationally and serves actively in burn-related humanitarian agencies. Throughout his career, Dr. Fisher has emphasized the importance of a holistic approach seeking the restoration of not only physical health, but emotional recovery, social connection, and work reintegration of his patients. Dr. Fisher is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Melanoma, Neurofibromatosis, Craniosynostosis, Osteotomy, and Bone Graft.

Lee Akst, M.D., specializes in treating the larynx (voicebox), in particular the treatment of voice and swallowing disorders. He is a leading laryngologist in office-based procedures such as vocal fold injection augmentation, pulsed KTP laser treatment, and laryngeal botox injection. In the operating room, Dr. Akst specializes in phonosurgery for the treatment of vocal cord disease, with emphasis on voice restoration and improvement. A strong focus of his practice involves the use of pulsed angiolytic lasers, which allow for subspecialized care of laryngeal papillomas, laryngeal dysplasia, and early vocal cord cancers while preserving the quality and strength of the voice. Dr. Akst is a national leader in the field of laryngology and serves in leadership roles for the American Laryngological Association, the American Broncho-Esophagological Association, and the American Academy of Otolaryngology-Head and Neck Surgery. He lectures extensively on the treatment of laryngeal disease, teaching other physicians how to care for patients with voice and swallowing concerns. His research interests include the development of robotic laryngeal surgery, the study of voice and swallowing complaints in the elderly, and the advancement of pulsed lasers for the treatment of laryngeal diseases with a focus on leukoplakia. This provider is registered with the Florida Department of Health to perform telehealth services for patients in Florida. Dr. Akst is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Spasmodic Dysphonia, Laryngitis, Perichondritis, Endoscopy, and Laryngectomy.

Alexander Hillel specializes in the medical and surgical management of patients who have scar tissue blocking their larynx and/or trachea, a condition called laryngotracheal stenosis. This condition occurs in patients who have had prolonged intubation, an autoimmune disease or a rare disease called idiopathic subglottic stenosis. He also treats patients with voice and throat problems, including spasmodic dysphonia and swallowing difficulty. After he earned his medical degree from the Tulane University School of Medicine, Dr. Hillel completed his residency in otolaryngology–head and neck surgery at the Johns Hopkins University School of Medicine and a fellowship in laryngology and airway surgery at the Emory Voice Center. Dr. Hillel directs a laboratory that seeks to better understand why scar forms in the larynx and trachea. In an effort to improve treatment, he and his team investigate the relationship between the immune system, bacteria and other antigens and scar formation in the airway. He has led a number of clinical trials to improve treatment for subglottic stenosis, including the first interventional study for idiopathic subglottic stenosis. Researchers in Dr. Hillel’s lab are also testing drugs that may halt the progression of, or reverse, scar formation, and they have engineered a drug-eluting stent that is being tested to translate to patients with subglottic stenosis. He holds sponsored grants to conduct his research from the National Institutes of Health, surgical foundations and the medical device industry. In addition to clinical and research work, Dr. Hillel has a leadership role within the Department of Otolaryngology–Head and Neck Surgery, serving as the vice director of education. Dr. Hillel is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Spasmodic Dysphonia, Subglottic Stenosis, Perichondritis, Laryngectomy, and Endoscopy.

Otolaryngologist Vaninder “Vinny” K. Dhillon specializes in endocrine surgery, laryngology, otolaryngology, parathyroid diseases and surgery, swallowing disorders, thyroid diseases and surgery, and voice problems. She treats both children and adults. After earning her medical degree from Keck School of Medicine of the University of Southern California, Dr. Dhillon completed a residency in otolaryngology at Los Angeles County and University of Southern California Medical Center. Dr. Dhillon’s research interests include the role of voice outcomes in patients after thyroid and parathyroid surgery when there is concern for vocal fold weakness or paralysis, evaluation of the role of office-based treatment on vocal fold paralysis, as well as neurogenic recovery of vocal fold paralysis. Dr. Dhillon is also interested in treatments for neurogenic chronic cough, which is refractory to other medical intervention. Dr. Dhillon is rated as an Experienced provider by MediFind in the treatment of Neurofibromatosis. Her top areas of expertise are Laryngeal Nerve Damage, Spasmodic Dysphonia, Neurofibromatosis Type 2 (NF2), Thyroidectomy, and Parathyroidectomy.