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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?
Dafydd G. Evans
Elite in Neurofibromatosis
Elite in Neurofibromatosis
Wilmslow Road, 
Manchester, ENG, GB 

Dafydd Evans practices in Manchester, United Kingdom. Evans is rated as an Elite expert by MediFind in the treatment of Neurofibromatosis. Their top areas of expertise are Schwannomatosis, Neurofibromatosis Type 2 (NF2), Acoustic Neuroma, Oophorectomy, and Salpingo-Oophorectomy.

Elite in Neurofibromatosis
Elite in Neurofibromatosis

Mass General Brigham Cancer Institute: Neuro-Oncology

55 Fruit Street, Yawkey Center For Outpatient Care, 
Boston, MA 
Languages Spoken:
English
Accepting New Patients
Offers Telehealth

Scott Plotkin is a Neurologist in Boston, Massachusetts. Dr. Plotkin is rated as an Elite provider by MediFind in the treatment of Neurofibromatosis. His top areas of expertise are Schwannomatosis, Neurofibromatosis Type 2 (NF2), Neurofibromatosis, and Acoustic Neuroma. Dr. Plotkin is currently accepting new patients.

 
 
 
 
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Elite in Neurofibromatosis
Elite in Neurofibromatosis

Johns Hopkins Outpatient Center

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

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.

What are the latest Neurofibromatosis Clinical Trials?
A Phase 3 Randomized Non-Inferiority Study of Carboplatin and Vincristine Versus Selumetinib (NSC# 748727) in Newly Diagnosed or Previously Untreated Low-Grade Glioma (LGG) Not Associated With BRAFV600E Mutations or Systemic Neurofibromatosis Type 1 (NF1)

Summary: This phase III trial compares the effect of selumetinib versus the standard of care treatment with carboplatin and vincristine (CV) in treating patients with newly diagnosed or previously untreated low-grade glioma (LGG) that does not have a genetic abnormality called BRAFV600E mutation and is not associated with systemic neurofibromatosis type 1. Selumetinib works by blocking some of the enzymes ...

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Clinical and Demographic Characteristics of Adult Patients With NEurofibromatosis in RUSsia

Summary: Clinical and Demographic Characteristics of Adult Patients with NEurofibromatosis in RUSsia (NEREUS)