Neurofibromatosis
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Learn About Neurofibromatosis

Condition 101 content is not available at this time, but we are continually updating the site. Please check back.

However, there may be experts who have treated this or similar conditions in our Find a Doctor section and research may be available in our Latest Advances section.

Who are the top Neurofibromatosis Local Doctors?
Elite in Neurofibromatosis
Elite in Neurofibromatosis

Johns Hopkins Outpatient Center

601 North Caroline Street, Floor 5, Floor 5, 
Baltimore, MD 
Languages Spoken:
English

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. She is also highly rated in 27 other conditions, according to our data. Her clinical expertise encompasses Neurofibromatosis, Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis Type 1 (NF1), and Laminectomy. Dr. Blakeley is board certified in American Board Of Psychiatry And Neurology.

Elite in Neurofibromatosis
Neurology
Elite in Neurofibromatosis
Neurology

Johns Hopkins Health Care & Surgery Center - Green Spring Station, Lutherville

Lutherville, MD 
Languages Spoken:
English, Spanish
Offers Telehealth

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. He is also highly rated in 13 other conditions, according to our data. His clinical expertise encompasses Neurofibromatosis, Neurofibromatosis Type 1 (NF1), Schwannomatosis, and Astrocytoma. Dr. Romo is board certified in American Board Of Psychiatry And Neurology.

 
 
 
 
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Elite in Neurofibromatosis
General Surgery | Neurosurgery
Elite in Neurofibromatosis
General Surgery | Neurosurgery

Johns Hopkins Outpatient Center

601 North Caroline Street, Floor 5, Floor 5, 
Baltimore, MD 
Experience:
44+ years
Languages Spoken:
English
Offers Telehealth

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 Elite provider by MediFind in the treatment of Neurofibromatosis. He is also highly rated in 19 other conditions, according to our data. His clinical expertise encompasses Schwannomatosis, Neurofibromatosis, Thoracic Outlet Syndrome, Rhizotomy, and Laminectomy. Dr. Belzberg is board certified in American Board Of Neurological Surgery.

What are the latest Neurofibromatosis Clinical Trials?
Prevalence, Clinical Characteristics, Progression, and Management of Neurofibromatosis Type 1 in Egypt (NF1-Egy)

Summary: Neurofibromatosis type 1 (NF1), a genetic disorder, results from NF1 gene mutations with nearly complete penetrance (1). NF1 is considered common as a rare disease; it has a birth incidence of approximately one every 3000 and a prevalence of one case every 3000-6000 individuals. Patients with NF1 present lifelong phenotypic variabilities, including those mentioned in the National Institutes of Hea...

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Risk Stratified Treatment for Patients With Newly Diagnosed Juvenile Myelomonocytic Leukemia: A Phase I/II Non-randomized Study of Trametinib and Azacitidine With or Without Chemotherapy (IND #164058)

Summary: This clinical trial will test the safety and efficacy of combining trametinib and azacitidine in patients with juvenile myelomonocytic leukemia (JMML). Newly diagnosed lower-risk JMML patients will receive trametinib and azacitidine. High-risk JMML patients will receive trametinib, azacitidine, fludarabine, and cytarabine.