New Jersey - Rutgers New Jersey Medical School - Caroline Hayes-Rosen, MD (Pediatarics); Clinic Coordinator: Christina Kresge, MS, CGC - Rutgers New Jersey Medical School
Florida - Advent Health Medical Group Neurofibromatosis Clinic - Advent Health Medical Group Pediatric Neurofibromatosis Clinic - Chenue Abongwa, MD, NF Medical and Clinical Direction, Pediatric Oncology/Hematology; Christine Goodwin, BSN, RN Clinic Coordinator; Stephanie Jerome, MD, Neuropsychology; Julia Henry, MD, Neurology; Konda Reddy, MD, Endocrinology; Maureen Maciel, MD, Orthopedics * * * * * * * * * * * * * * * * * * * * * * * * * * * * * Adult Neurology & Oncology; Advent Health Medical Group Neuro-Oncology at Orlando -
Location: 2501 North Orange Avenue Suite # 286 Orlando FL 32804
Phone: 407-303-2270
Physicians: Ivo Tremont, MD - Advent Health Medical Group Neurofibromatosis Clinic
Illinois - Ann & Robert H. Lurie Children's Hospital of Chicago - Dr. Miriam Bornhorst, head of the Neurofibromatosis (NF) oncology program; Robert Listernick, MD, Pediatrician; Joel Charrow MD, Geneticist; Genetic Counselor and Clinic Coordinator: Allison Goetsch, MS, CGC - Ann & Robert H. Lurie Children's Hospital
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
California - Stanford Neuroscience Health Center - Jacinda Sampson, Neurogeneticist; Thomas J. Wilson, MD, MPH, FAANS, Co-Director, Center for Peripheral Nerve Surgery - Stanford Health Center
California - Stanford/Lucile Packard Children's Hospital - Cynthia Campen, MD; David A. Stevenson, MD; Thomas J. Wilson, MD, MPH, FAANS, Co-Director, Center for Peripheral Nerve Surgery; Ellyn Farrelly, Genetic Counseling Supervisor - Stanford/Lucile Packard Children's Hospital
Arizona - Mayo Clinic Hospital - Phoenix - Maciej Mrugala, MD, PhD, Neuro-Oncology; Dr. Mayo A. Osundiji, M.B.B.S., Ph.D., Genetics; Dr. Alyx. B. Porter, M.D., Neuro-oncology; Dr. Shannon P. Fortin Ensign, M.D., Ph.D., Oncology - Mayo Clinic Hospital - Phoenix
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
Arizona - Phoenix Children's Hospital - Neil R. Friedman, MBChB/ Neurology; Ross Mangum, MD/ Hematology & Oncology; Clinic Coordinator: Nicole Del Col
* * * * * * * * * * 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
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
Alabama-University of Alabama at Birmingham - Bruce Korf, MD, PhD; Laura "Katie" Metrock, MD; Clinic Coordinator: Tammi Skelton, CRNP - University of Alabama at Birmingham
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
Colorado - Children's Hospital Colorado - Jessica Win, MD; Aaina Kochhar, MD; and Jennifer Janusz PsyD, ABPP-Cn; Clinic Coordinator: Allison Hause, RN, BSN
- Children's Hospital Colorado
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
Illinois - Northwestern Memorial Hospital - Neuor-Oncology - Karan Dixit, MD, Neuro Oncology/Neurology; Clinic Coordinator: Kellie Mora, RN - Clinic Schedule: (½ day on 3rd Tuesday of every month, etc.) 1/month. - Northwestern Memorial 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
Indiana - Riley Children's Health - IU Health - Clinical Directors: Steven Rhodes MD, PhD and Laurence Walsh, MD; Lisa Smith, MD, Laurence Walsh, MD, and Fabio Nunes, MD are involved in seeing neurofibromatosis patients on a weekly basis; Clinic Coordinator: Lisa Langsford, RN, BSN - Riley Children's Health - IU Health
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
Iowa - UI Stead Family Children's Hospital - Alpa Sidhu, MD, PhD, Clinical Geneticist and Karin Panzer, MS, CGC - UI Stead Family Children's Hospital
Georgia - Georgia Cancer Center/Children’s Hospital of Georgia - Dr. John W. Henson, MD, Neuro-oncology, Genetics, Adult Neurology; Colleen McDonough, MD, Pediatric Oncology; Suzanne Strickland, MD, Pediatric Neurology, Pediatric Epilepsy; Clinic Coordinator: Heather Hendrix. Currently clinic schedule is as follows: First Tuesday afternoon of each month, although patients can be seen on other days according to need. - Georgia Cancer Center/Children’s Hospital of Georgia
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
Maryland - The Johns Hopkins Hospital - Comprehensive NF Center - Jaishri Blakeley, MD, Director, Comprehensive NF Center; Allan Belzberg, MD, Director of Peripheral Nerve Surgery; Carlos Romo, M.D., Neuro-oncologist; Shannon Langmead, CRNP - The Johns Hopkins Hospital
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
Florida - UF Health Neuromedicine – Neuromedicine Hospital - Hans H. Shuhaiber M.D. hshuhaiber@ufl.edu, Clinical Assistant Professor of Neurology, Adult Neurology, Adult Genetics - UF Health Neuromedicine – Neuromedicine Hospital
California - Miller Children’s and Women’s Hospital - Natalie Gallant, MD; Angela Myers, MD; Leslie Raffel, MD; Katie Singh, MPH, MS, LCGC; Meghan Gillespie, MS, LCGC - Miller Children’s and Women’s Hospital
California - UC Irvine Medical Center - Angela Myers, MD; June-Anne Gold, MD; Katherine Hall, MS, LCGC; Meghan Gillespie, MS, LCGC - UC Irvine Medical Center
California - Children's Hospital Orange County - Neda Zadeh,MD, Genetics; Maureen Bocian, MD; Virginia Kimonis, MD; Katherine Hall, MS, LCGC; Touran Zadeh, MD, Genetics; Afshin Aminian, MD, Orthopaedics; Lily Tran, MD, Neurology; Sharief Taraman, MD, Neurology; Carol Lin, MD, Hematology/Oncology; Michael Muhonen, MD, Neurosurgery; Joffre Olaya, MD, Neurosurgery; William Loudon, MD, Neurosurgery - Children's Hospital Orange County
Illinois - University of Chicago Medicine - James Tonsgard, MD, Director, University of Chicago Ambulatory Program for Neurofibromatosis; Clinical Nurse - Deborah Ruckman, RN (773-834-1927) - University of Chicago Medicine
California - UC Davis Health - MIND Institute - Suma Prabhu Shankar, M.D., Ph.D.; Colette DeFilippo, M.S., L.C.G.C. Genetic Counselor - UC Davis Health - MIND Institute
California - UCSF Benioff Children’s Hospital - Alyssa Reddy, MD, Pediatric neurologist; Line Jacques, MD, Peripheral nerve surgery (Adults) - UCSF Benioff Children’s Hospital
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
Texas - UT Southwestern/Children’s Health Dallas - Laura Klesse, MD, PhD (children) and Lu Le, MD, PhD (adults); Clinic Coordinator: Alexis Kennedy, PNP - UT Southwestern/Children’s Health Dallas
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
Oklahoma - University of Oklahoma Health Sciences Center - PAC Ashley Taylor (NF); Dr. Anne Tsai, Clinical and Metabolic Geneticis; Clinic Coordinator Anna Wright, BS - University of Oklahoma Health Sciences Center
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
California - Cedars-Sinai Medical Center - Pedro A. Sanchez, MD, Director, Medical Genetics; Katie Grand - Genetic Counselor
- Cedars-Sinai Medical Center
California - House Clinic - William H. Slattery, III, MD; David Brackmann, MD; Gregory p. Lekovic, MD, PhD; Gautam U. Mehta, M.D.
- House Clinic
California - Children's Hospital Los Angeles - Patients can be referred to either the Division of Neurology or Division of Medical Genetics. Tena Rosser, MD
Associate Professor of Clinical Neurology, USC Keck School of Medicine; Linda Randolph, MD, FAAP, FACMG
Head of the Division of Medical Genetics at Children's Hospital Los Angeles.
- Children's Hospital Los Angeles
Florida - Moffitt Cancer Center - Xia Wang, MD, PhD; Sepideh Mokhtari, MD - Moffitt Cancer Center
Connecticut - Connecticut Children's Medical Center - Francis DiMario, MD; Clinic Coordinator: Alyssa White, RN, BSN - Connecticut Children's Medical Center
California - University of California, Los Angeles - UCLA - Phioanh (Leia) Nghiemphu, MD, Director; Marco Giovannini, MD, PhD, Scientific Director
- University of California, Los Angeles - UCLA
California - City of Hope - Susan Shehayeb, M.S., L.C.G.C., Genetic Counselor for NF and cancer risk assessment and counseling; Thomas P. Slavin, M.D., Clinical Geneticist (Follows adults and children with NF1); Neal Prakash, M.D., Neurologist (Follows NF patients); Wai-Yee Li, M.D., Ph. D., Plastic Surgeon; Warren Chow, M.D., Oncologist; Vijay Trisal, M.D., Surgical Oncologist - City of Hope
