The 20 Best Legius Syndrome 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 Advanced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Neurofibromatosis, Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis Type 1 (NF1), and Laminectomy.

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

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

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 Experienced provider by MediFind in the treatment of Legius Syndrome. His top areas of expertise are Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Schwannomatosis, and Astrocytoma.

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 an Experienced provider by MediFind in the treatment of Legius Syndrome. 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 an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Schwannomatosis, Neurofibromatosis, Neurofibromatosis Type 1 (NF1), and Undifferentiated Pleomorphic Sarcoma.

Dr. Guryildirim is an Assistant Professor in Pediatric Radiology and Pediatric Neuroradiology. She earned her medical degree from Hacettepe University and went on to complete her radiology residency at the Gazi University School of Medicine. After residency, she completed a two-year-long fellowship in Neuroradiology at Rush University Medical Center where she was the chief fellow. She then completed a one-year-long fellowship in Advanced Imaging before joining the Rush University Medical Center Neuroradiology faculty. Dr. Guryildirim's research interests focus on functional brain imaging of epilepsy patients, hydrocephalus and headache. Dr. Guryildirim is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Legius Syndrome, Headache, Moyamoya Disease, Posterior Fossa Decompression, and Endovascular Embolization.

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 Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Malignant Peripheral Nerve Sheath Tumor, Neurofibromatosis Type 1 (NF1), Neurofibromatosis, Adult Soft Tissue Sarcoma, and Osteotomy.

Dr. Barañano earned her M.D. and Ph.D. degrees from the Johns Hopkins University School of Medicine, where she also completed residencies in pediatrics and neurology, along with a fellowship in neurogenetics at the Kennedy Krieger Institute. Dr. Barañano is an Associate Professor of Clinical Neurology. She specializes in the diagnosis and management of rare neurogenetic disorders. She has a particular interest in the genetic control and function of the cerebellum and expertise in childhood-onset and inherited ataxias. She is a member of the multidisciplinary Fetal Management group and is available for prenatal consultations. Dr. Barañano's research includes collaborative efforts with the Johns Hopkins Department of Genetic Medicine and the Division of Neurogenetics at the Kennedy Krieger Institute. Dr. Baranano is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Hypotonia, Ohdo Syndrome, Say-Barber-Biesecker-Young-Simpson Variant, Focal or Multifocal Malformations in Neuronal Migration, and Hereditary Ataxia.

Mari Groves is a Johns Hopkins pediatric neurosurgeon who cares for children with brain and spinal cord tumors (benign and cancerous), skeletal dysplasia, and spinal deformities such as neuromuscular and early scoliosis. She also sees patients diagnosed with Chiari malformations, spasticity and epilepsy. She specializes in treating patients with all types of spina bifida, including myelomeningocele. As part of the Johns Hopkins Center for Fetal Therapy, she is an expert in prenatal closure techniques such as minimally invasive fetoscopic repair of myelomeningocele (when the spina bifida defect is repaired before birth). Offering a transitional practice model of care, she follows patients diagnosed with spina bifida from birth to adulthood. Dr. Groves chose to pursue neurosurgery because it allows her to treat patients with complex conditions and help improve the quality of children’s lives. Her research interests focus on pediatric spinal disease and how surgical intervention can impact growth and neurological function during a child’s life. She is committed to building programs that support patients with congenital disorders as they age. Pediatric patients often age out of existing programs and have difficulty locating physicians and treating teams that understand their conditions. At Johns Hopkins, we have a unique ability to provide this type of comprehensive care. Dr. Groves earned her medical degree from the Vanderbilt University School of Medicine in 2007. She completed residency training in 2014 at The Johns Hopkins Hospital, where she remained for a neurosurgery fellowship, which she finished in 2015. She also completed a spinal deformity fellowship at Shriners Hospitals for Children in Philadelphia. Dr. Groves is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Spinal Tumor, Myelomeningocele, Tethered Cord Syndrome, Osteotomy, and Laminectomy.

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 Legius Syndrome. His top areas of expertise are Melanoma, Neurofibromatosis, Craniosynostosis, Osteotomy, and Bone Graft.

Dagmara Pychynski is a Neurologist in Elkton, Maryland. Dr. Pychynski has been practicing medicine for over 18 years and is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Generalized Tonic-Clonic Seizure, Seizures, Peripheral Neuropathy, and Memory Loss.

Suresh Patel is a primary care provider, practicing in Internal Medicine in Waldorf, Maryland. Dr. Patel is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. His top areas of expertise are Familial Hypertension, Hypertension, Glucocorticoid-Remediable Aldosteronism, and Multiple Carboxylase Deficiency.

Meghan Meghpara is a Pediatrics provider in Columbia, Maryland. Dr. Meghpara is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Autism Spectrum Disorder, Microcephaly, Asthma in Children, and Delayed Growth.

Jennifer Powers is a Plastic Surgeon and a Dermatologist in Baltimore, Maryland. Dr. Powers is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Basal Cell Skin Cancer, Actinic Keratosis, Pityriasis Rubra Pilaris, and Squamous Cell Skin Carcinoma.

Myria Petrou is a Neuroradiologist in Rockville, Maryland. Dr. Petrou is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Stroke, Pediatric Low-Grade Glioma (pLGG), Headache, and Meningioma.

Sonia Krish is a Neurologist in Columbia, Maryland. Dr. Krish has been practicing medicine for over 17 years and is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Cervical Myelopathy, Hemangioblastoma, Invertebral Disc Disease, and Spinal Tumor.

Sushma Jani is a Psychiatrist and a Child and Adolescent Psychiatrist in Columbia, Maryland. Dr. Jani has been practicing medicine for over 44 years and is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. Her top areas of expertise are Bipolar Disorder (BPD), Seasonal Affective Disorder (SAD), Major Depression, and Generalized Anxiety Disorder (GAD).

Sean Gunning is a Dermatologist in Pikesville, Maryland. Dr. Gunning is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. His top areas of expertise are PARC Syndrome, Hypomelanosis of Ito, Acne, and Hartsfield Syndrome.

Ahmad Hossani is a Dermatologist in Largo, Maryland. Dr. Hossani has been practicing medicine for over 18 years and is rated as an Experienced provider by MediFind in the treatment of Legius Syndrome. His top areas of expertise are Trichorrhexis Nodosa, Keloids, Autosomal Recessive Hypotrichosis, and Alopecia Areata.