Indiana - Indiana University Health – Riley Children’s - Clinic Director: Steven Rhodes, MD, PhD Clinic Co.Director: Laurence E. Walsh, MD - Indiana University Health – Riley Children’s
Illinois - Northwestern Memorial Hospital - Neuor-Oncology - Clinic Co-Directors: Roger Stupp, MD and James P. Chandler, MD - Northwestern Memorial Hospital
Illinois - Ann & Robert H. Lurie Children's Hospital of Chicago - Clinic Director: Robert Listernick, MD Clinic Co.Directors: Carlos E Prada, MD - Miriam Bornhorst, MD - Janice Lasky Zeid, MD - Ann & Robert H. Lurie Children's Hospital
Illinois - University of Chicago Medicine - James Tonsgard, MD, Director, University of Chicago Ambulatory Program for Neurofibromatosis - University of Chicago Medicine
California - Children's Hospital Los Angeles - Clinic Director: Tena Rosser, MD Clinic Co-Director: Linda Randolph, MD, FAAP, FACMG
- Children's Hospital Los Angeles
California - House Clinic - William H. Slattery, III, MD and Gregory p. Lekovic, MD, PhD
- PIH Health House Clinic
California - Stanford Neuroscience Health Center - Clinic Director: John Day, ND, PhD - Stanford Health Center
California - University of California, Los Angeles - UCLA - Clinic Director: Phioanh (Leia) Nghiemphu, MD Clinic Scientific Director: Marco Giovannini, MD, PhD
- University of California, Los Angeles - UCLA
California - UCSF Benioff Children’s Hospital - Pediatric Clinic Director- Alyssa Reddy, MD, Adult Clinic Director: Dr. Brian Na, MD, PhD*****************************Pediatric website: https://www.ucsfbenioffchildrens.org/clinics/neurofibromatosis-type-1-nf-1-and-schwannomatosis - UCSF - University of California, San Francisco
Arizona - Mayo Clinic Hospital - Phoenix - Clinical Director: Mayoa (Mayo) A. Osundiji, MBBS, PhD Clinical Co-Director: Maciej M Mrugal, MD - Mayo Clinic Hospital - Phoenix
Arizona - Phoenix Children's Hospital - Clinic Director: Neil R. Friedman, MBChB/ Neurology; Clinic Co-Director: Ross Mangum, MD
* * * * * * * * * * Phoenix Children’s Neurofibromatosis Clinic -
Living with NF can be challenging, but at Phoenix Children’s Neurofibromatosis Clinic we provide comprehensive patient-centered care and compassionate support. We understand that each patient's journey with NF is unique, which is why we take a holistic approach to care, bringing together a team of specialists to address every aspect of the condition. We partner with our patients to empower them to take an active role in managing their health and well-being and prioritize open communication. We partner with our patients to empower them to take an active role in managing their health and well-being and prioritize open communication. Our multidisciplinary team of world-class specialists includes neurologists, oncologists, ophthalmologists, genetic counselors, dermatologists, and other experts who work collaboratively to provide personalized treatment plans. We are dedicated to advancing the field of NF research, offering cutting-edge treatments, and supporting patients every step of the way. Together, we can build a brighter future for NF patients and their families.
- Phoenix Children's Hospital
Oklahoma - University of Oklahoma Health Sciences Center - Clinic Director: Danielle DeMarzo, MD; Clinic Co-Director: Rene Y. McNall-Knapp, MD - University of Oklahoma Health Sciences Center
Maryland - The Johns Hopkins Hospital - Comprehensive NF Center - Jaishri Blakeley, MD; Allan Belzberg, MD; Carlos Romo, MD; Stephanie Morris, MD; Shannon Langmead, NP
- The Johns Hopkins Hospital
Texas - UT Southwestern/Children’s Health Dallas - Laura Klesse, MD, PhD (children) and Justin Jordan, M.D., M.P.H. (adults); Clinic Coordinator: Alexis Kennedy, PNP - UT Southwestern/Children’s Health Dallas
New Jersey - Rutgers New Jersey Medical School - Caroline Hayes-Rosen, MD (Pediatarics); Clinic Coordinator: Christina Kresge, MS, CGC - Rutgers New Jersey Medical School
Oregon - Randall Children's Hospital at Legacy Emanuel Medical Center - Drea Peterson, MD, Clinical Geneticist, Neurofibromatosis Clinic Director; Clinical Coordinator: Leslie Granger, MS, CGC (Adults with NF are seen in Genetics with triage to additional sub-specialists based on individual patient needs.) - Randall Children’s Hospital at Legacy Emanuel
New York - Columbia University Irving Medical Center - Gurcharanjeet Kaur, MD, Director of NF Program; Clinic Coordinator: Kaleah Miller - Columbia University Irving Medical Center
Ohio - UH Rainbow Babies and Children's Hospital - Clinic Director: Duncan Stearns, MD; Clinic Co-Director: Breanne Roche, DNP, APRN, CPNP-PC, CPHON; Clinic Coordinator(s): Kelly Laschinger, PNP and Ashley Rowe, MA - UH Rainbow Babies and Children's Hospital
Missouri - Children’s Mercy Hospital - Clinical Directors: Keely Fitzgerald, DO and Dihong Zhou, MD; Clinic Coordinator: Beth Shepard, BSN, RN, RNC-NIC, CPN. Clinic sees patients until the age of 21-22 years. Patients are then transitioned to UMKC/KUMC. - Children’s Mercy Hospital
Missouri - Washington University School of Medicine in St. Louis - Center Director: David Gutmann, MD, PhD; Stephanie Morris, MD; Clinic Coordinator: Erika Ramirez, BSN, RN (Adult NF Care - for an appointment email: NFClinic@wustl.edu) - Washington University School of Medicine in St. Louis
Tennessee - Vanderbilt University Medical Center/Vanderbilt-Ingram Cancer Center - Dr. Bryce Schuler, MD, PhD for Pediatrics and Genetics; Dr. Alex Mohler, M.D., Co-Director of VICC Neurofibromatosis Clinic for Adult Care and Assistant Professor, Department of Neurology’s Neuro-Oncology - Vanderbilt University Medical Center/Vanderbilt-Ingram Cancer Center
Utah - University of Utah - David H. Viskochil, MD, PhD and Vanina Taliercio, MD (Pediatrics); Dr. Juliann Allred (Adults) 801-585-7575; Genetics Clinic Coordinator - Ryan Bliatout/Clinic Nurse - Niki Cherico, RN
- University of Utah
Ohio - Akron Children’s Hospital - Erin Wright, MD and Matthew Ginsberg, MD; Clinic Coordinator: Katie Wilhelm (The clinic sees new patients up to age 21) - Akron Children’s Hospital
Ohio - UH Cleveland Medical Center - Herbert Newton, MD, FAAN, Medical Director, Neuro-Oncology Program and Brain Tumor Institute, UH CMC and Seidman Cancer Center - UH Cleveland Medical Center
Michigan - NF Clinic Grand Rapids - APPOINTMENTS:
CHILDREN - Drs. Daniel Fain, Harlori Bains and Robin Cook - 616-267-2500
ADULTS - Dr. Bernie Eisenga - 616-391-2123; Dr. Cynthia Hingtgen - 616-267-7104
INFORMATION: 616-451-3699
FAX: 616-391-2505
Comprehensive NF1 diagnosis and management for both adults and children. NF2 diagnosis and monitoring for adults and teens. Schwannomatosis diagnosis and management. - NF Clinic Grand Rapids
Michigan - University of Michigan - Adult Genetics - SCHEDULING APPOINTMENTS:
Please note that you need a referral from your doctor to schedule an appointment with our clinic. For more information, contact us at 734-647-8902. - University of Michigan - Adult Genetics
Michigan - Corewell Health East - NF Clinic - Heather Little, DO, neurology; Kate Gowans, MD, hematology-oncology; Sue Burke, RN, BSN, CPN, Clinical Nurse Coordinator - Corewell Health East - NF Clinic
New York - NYU Langone Health - Director, Comprehensive NF Center: Kaleb Yohay, MD; Devorah Segal, MD, PhD; Pediatric Neurology, Neuro-Oncology, J. Thomas Roland MD, Neuro-Otology; John Golfinos MD; Neurosurgery.
Clinic Coordinator: Carole Mitchell, MS, RN, 212-263-9695. If you are hearing impaired, please email carole.mitchell@nyulangone.org - NYU Langone Heath
Ohio - Cincinnati Children's Hospital Medical Center - Center Director: Elizabeth Schorry, MD; Carlos Prada, MD; Clinic Coordinator Geri Kelly, BSN, RN, CPN - Cincinnati Children's Hospital Medical Center
Virginia-Children’s Hospital of Richmond at VCU - Zhihong Joanne Wang, MD; Clinic Coordinator: Jill Farrar, RN, MSN - Children’s Hospital of Richmond at VCU
New York - John R. Oishei Children's Hospital - Matthew Barth, MD (Neuro-oncology) and Veetai Li, MD (Neurosurgery); Michelle Ventola, Program Specialist, MVentola@kaleidahealth.org - John R. Oishei Children's Hospital
Hawaii - Sorry, no physicians were found in your area. NF Network - televisit - -
Wyoming - Sorry, no physicians were found in your area. NF North Central - televisit - Sorry, no physicians were found in your area.
For information, please contact:
NF North Central
Connect with us by clicking here.
http://nfnorthcentral.nfnetwork.org -
Montana - Sorry, no physicians were found in your area. NF North Central - televisit - -
Idaho - Sorry, no physicians were found in your area. NF Network - televisit - -
Alaska - Sorry, no physicians were found in your area. NF Network - televisit - -
Washington - University of Washington Medical Center - Montlake - Lynne P. Taylor, M.D., F.A.A.N., F.A.N.A.; Jerome Graber, MD, MPH, FAAN; Manuel Ferreira, MD, PhD, Neurosurgery. (NOTE: treat patients 18 years of age and over only - Serves Washington, Wyoming, Alaska, Montana, and Idaho, as part of the WWAMI service region for University of Washington. This location offers televisits for Alaska and Hawaii patients.) - University of Washington Medical Center - Montlake
Texas - Vida Bela Plastic Surgery - Chelsea Snider, MD, Director of Vida Bela Plastic Surgery | Plastic, Reconstructive, & Craniofacial Surgery | Fax: 469-598-2399 | Email: info@vidabelaplasticsurgery.com
- Vida Bela Plastic Surgery
New York - Roswell Park Comprehensive Cancer Center - Director: Lindsay Lipinski, M.D.; Nurse Coordinator: Mary Rose Vater; Social Worker: Bethann Levin
- Roswell Park Comprehensive Cancer Center
New York - Memorial Sloan Kettering NF Program - Matthias A. Karajannis, MD, MS (Pediatric Neuro-oncology Services), Anna Piotrowski, MD (Adult Neuro-oncology Services) - Memorial Sloan Kettering NF Program
Pennsylvania - Geisinger Medical Center - Neurosurgery - Anne Marie Morse, DO, Director of Pediatric Neurology; Clinic Coordinator: Brianna Porreca BSN, RN, Pediatric Neurosurgery Nurse Navigator - (Clinic Schedule: half day, monthly) - Geisinger Medical Center - Neurosurgery
Connecticut - Yale New Haven Hospital - Asher Marks, MD, Director of Pediatric Neuro-Oncology; Clinic Coordinator: Jamie Batson Phone: 1-877-925-3637 (1-877-YALE MDS) Fax: 203-737-7635 - Yale New Haven Hospital
Texas - Baylor College of Medicine-Plastic Surgery - Sebastian Winocour, MD, MSc, FACS, Baylor College of Medicine, Division of Plastic Surgery - Baylor College of Medicine
Wisconsin-Children’s Wisconsin - Donald Basel, MD and Leah Lalor, MD/Dermatology; Clinic Coordinator: Lisa Koneazny, RN, BSN - Children’s Wisconsin
Ohio - The Ohio State University Wexner Medical Center - (NF2) - Oliver Adunka, MD; Clinic Coordinator: Nina Holman; Scheduling and other inquiries: 614-366-3931 or Laura.Scott@osumc.edu * * * * * (NF1) - Neuro-oncology 614-293-4448 - Pierre Giglio, MD; Clement P. Pillainayagam, MD - The Ohio State University Wexner Medical Center
South Carolina - Sorry, no physicians were found in your area. NF Network - -
New Mexico - Sorry, no physicians were found in your area. NF Network - -
Nevada - Sorry, no physicians were found in your area. NF Network - -
Mississippi - Sorry, no physicians were found in your area. NF Network - -
South Dakota - Sanford Health - Eric Trumble, MD - Sanford Health
Tennessee - Le Bonheur Children's Hospital - Eniko K. Pivnick, MD, Geneticist; Andrei V. Alexandrov, MD, Chairman, Dept. of Neurology - Le Bonheur Children's Hospital
Pennsylvania - Children's Hospital of Pittsburgh of UPMC - Kathy Gardner, MD; Jenna Gaesser, MD; Clinic Coordinator: Beth Heuer, CRNP - Children's Hospital of Pittsburgh of UPMC
Pennsylvania - Children's Hospital of Philadelphia - Director, NF Program: Michael Fisher, MD; Medical Director, NF Pediatric Program Rachel Hachen, MD, MPH; Clinical Coordinator: Clinical Coordinator: Andrea Rennie, RN, BSN - Children's Hospital of Philadelphia
Rhode Island - Sorry, no physicians were found in your area. NF Northeast - -
North Carolina - University of North Carolina Hospitals - Robert S Greenwood, MD and Timothy Gershon, MD, PhD; Clinic Coordinator: Betty Allen, BSN - University of North Carolina Hospitals
North Carolina - Duke University Medical Center - Director: David Van Mater, MD, PhD; Co-Director: Kirsten Schroeder, MD, MPH; Clinic Coordinator: Monica Austin - Duke University Medical Center
New York - Children's Hospital at Montefiore - Adam S. Levy, MD, Genetics; Marcela DelRio, MD, Nephrologist; Fatema Malbari, MD, Child Neurologist & Neuro-Oncologist; Linda Lightstone, Social Worker - Children's Hospital at Montefiore
Kansas - Sorry, no physicians were found in your area. NF Central Plains - -
North Dakota - Sorry, no physicians were found in your area. NF North Central - -
North Carolina - Wake Forest Baptist Health - Tamison Jewett, MD Clinic Director; David Kram, MD, Co-Director; Roy Strowd, MD, Co-Director - Wake Forest Baptist Health
Maryland - National Cancer Institute - Brigitte C. Widemann, MD, Chief, Pediatric Oncology Branch - National Cancer Institute
Massachusetts - Massachusetts General Hospital - Scott Plotkin, MD, Neurosurgical Oncologist, Neurologist; Justin Jordan, MD, MPH; Ann Slater, RN - Massachusetts General Hospital
Massachusetts - Boston Children's Hospital - David Miller, MD, PhD, Director, Neurofibromatosis Program; Nicole Ullrich, MD, PhD, Associate, Department of Neurology; Director, Neurologic Neuro-Oncology; Associate Director, Clinical Trials, Neurofibromatosis Program; Clinic Coordinator: Caroline McGowan, MS, Coordinator, Neurofibromatosis Program; Licensed Genetic Counselor, Division of Genetics and Genomics - Boston Children's Hospital
Louisiana - Louisiana State University and Children's Hospital New Orleans - Regina M. Zambrano, MD, Genetics - Pediatric; Hannah Meddaugh, MGCS, CGC *** (All new patient referral requests must be sent by fax: 504-896-3997 or entered into Epic medical record system.) *** Other inquiries email: hannah.meddaugh@lcmchealth.org - Louisiana State University and Children's Hospital New Orleans
Minnesota - Mayo Clinic - Departments of Clinical Genomics - Dusica Babovic-Vuksanovic, MD, FAAP, FACMG; Connie Kruger, RN and Laura Fisher, MS, CGC - Mayo Clinic
Minnesota - Children's Hospitals and Clinics of Minnesota - Marcelo Vargas, MD and Elizabeth Siqveland, APRN-CNP; Clinic Coordinator: Dinel Pon, MS, CGC - Children's Hospitals and Clinics of Minnesota
New Jersey - St. Joseph's Regional Medical Center - Directors: Punita Gupta, MD, FAAP, FACMG and Romana Kulikova, MD, FAAP; Clinic Coordinator: Lorien King, MS, LCGC - St. Joseph's Regional Medical Center
Massachusetts - Tufts Medical Center - Dallas Reed, MD, Medical Geneticist, Obstetrics ~ 617-636-5454; John Gaitanis, MD, Chief Pediatric Neurology ~ 617-636-8100; Carl B. Heilman, MD, Neurosurgeon in Chief ~ 617-636-5860; Julian K. Wu, MD, Chief, Division of Neurosurgical Oncology ~ 617-636-4500; Nancy Pinnell, Genetic Counselor ~ 617-636-4540 - Tufts Medical Center
Missouri - SSM Health Cardinal Glennon Children's Hospital - Amelia Kirby, MD (Director - Genetics); Ali Jamal, MD (Neurology); Thomas Geller, MD; Clinic Coordinator: Julie Engel, RN - SSM Health Cardinal Glennon Children's Hospital
New York - Albany Medical Center - Director: Lauren Weintraub, MD; NF Coordinator: Usha Sarecha
Physicians:
Dr. Matthew Murnane, Adult neurologist, 518-262-5226
Dr. Susan Weaver, Neuro-oncologist, 518-262-6696 - Albany Medical Center
