Neurofibromatosis Clinic
Phone: 1-319-356-2229
Location: 200 Hawkins Drive, Iowa City, IA 52242
Website: UI Stead Family Children's Hospital
Physicians: Clinic Director: Alpa Sidhu, MBBS, PhD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult
The Neurofibromatosis (NF) Multidisciplinary Program
Phone: (317) 944-2143
Location: 1030 W. Michigan Street, Indianapolis, IN 46202
Website: Indiana University Health – Riley Children’s
Physicians: Clinic Director: Steven Rhodes, MD, PhD Clinic Co.Director: Laurence E. Walsh, MD
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Adults, Children
Plastic & Reconstructive Surgery
Phone: 312-335-9566
Location: 60 E Delaware Place, #1450 Chicago, IL 60611
Website: McKay McKinnon, MD
Physicians: McKay McKinnon, MD; Plastic & Reconstructive Surgery, Plexiforms
Specialty: NF1, NF2
Facility Type: Children, Adults
Lou and Jean Malnati Brain Tumor Institute
Phone: 312-695-4360
Location: 675 N. St Clair St, 20th Floor, Chicago, IL 60611
Website: Northwestern Memorial Hospital
Physicians: Clinic Co-Directors: Roger Stupp, MD and James P. Chandler, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Adult (age >18)
Neurofibromatosis Program
Phone: 312-227-6120
Location: 467 West Deming Place, Suite 900Chicago, IL 60614
Website: Ann & Robert H. Lurie Children's Hospital
Physicians: Clinic Director: Robert Listernick, MD Clinic Co.Directors: Carlos E Prada, MD - Miriam Bornhorst, MD - Janice Lasky Zeid, MD
Specialty: NF1, NF2
Facility Type: Pediatric up to 22 years old
Neurofibromatosis Program
Phone: 773-702-6169
Location: Main Campus: 5841 S. Maryland Ave, Chicago, IL 60637
Website: University of Chicago Medicine
Physicians: James Tonsgard, MD, Director, University of Chicago Ambulatory Program for Neurofibromatosis
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult
Georgia Neurofibromatosis Clinic
Phone: (706) 721-KIDS (5437)
Location: Pediatric Neurology Clinic, 1446 Harper Street, Augusta, GA 30912
Website: Wellstar Children's Hospital of Georgia
Physicians: Clinic Director: John Henson, MD
Specialty: NF1, NF2
Facility Type: Children, Adults, Multi-Disciplinary
Neurofibromatosis Clinic
Phone: 404-785-5437
Location: 2174 North Druid Hills Road NE, Atlanta, GA 30329
Website: Children's Healthcare of Atlanta
Physicians: Clinic Director: David Wolf, MD, PhD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Neurofibromatosis Center
Phone: 305-663-8595
Location: 3100 SW 62 Avenue #301, Miami, FL 33155
Website: Nicklaus Children's Hospital
Physicians: Mislen S Bauer, MD, Director, Neurofibromatosis Program
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Adults, Children
Neurocutaneous Disorders Clinic
Phone: 727-767-4176
Location: 601 5th Street South, Suite 320, St. Petersburg, FL 33701
Website: Johns Hopkins All Children's Hospital
Physicians: Clinic Director: Stacie Stapleton, MD Clinic Co.Director: Melissa Crenshaw, MD, FAAP, FACMG
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Moffitt Genetic Neuro-oncology Clinic
Phone: 1-877-751-7930
Location: 12902 USF Magnolia Drive, Tampa, FL 33612
Website: Moffitt Cancer Center
Physicians: Clinic Director: Sepideh Mokhtari, MD Clinic Co.Director's Name: Nam Tran, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults
Neurofibromatosis Clinic
Phone: 904-427-8453
Location: 841 Prudential Drive, Suite 1900, Jacksonville, FL 32207
Website: University of Florida, Jacksonville, Jacksonville Health Science Center
Physicians: Pamela L. Trapane, M.D., Chief, Division of Pediatric Genetics. pamela.trapane@jax.ufl.edu
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Pediatric and Adult
UF Neurofibromatosis and Neurocutaneous Center
Phone: (352) 273-9000
Location: 1505 SW Archer Road 1st floor, Gainesville, FL 32610
Website: University of Florida, Neuro Medicine Hospital
Physicians: Clinic Director: Hans H. Shuhaiber M.D. hshuhaiber@ufl.edu
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult
AdventHealth Medical Group Pediatric Neurofibromatosis Clinic
Phone: 407-303-7945
Location: 2501 North Orange Avenue Suite # 589, Orlando, FL 32804
Website: AdventHealth for Children
Physicians: Medical Director: Chenue Abongwa, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric
Neurofibromatosis Multidisciplinary Clinic
Phone: 800-416-4441
Location: 1600 Rockland Road, Wilmington, DE 19803
Website: Nemours Children's Hospital
Physicians: Clinic Director: Dr. R. Taylor Sundby
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Neurogenetics Clinic
Phone: 860-837-7500
Location: 505 Farmington Avenue, Farmington, CT. 06032
Website: Connecticut Children's Medical Center
Physicians: Clinic Director: Francis DiMario, MD.
Specialty: NF1, NF2
Facility Type: Pediatrics up to 18
Neurofibromatosis Program
Phone: 720-777-4532 or 720-777-0020
Location: 13123 East 16th Ave, Aurora, CO 80045
Website: Children's Hospital Colorado
Physicians: Clinic Director: Aaina Kochhar Clinic Co-Director: John Binder, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult (up to 26 years)
Phone: 877-254-9362
Location: 1500 E. Duarte Road Duarte, CA 91010-3000
Website: City of Hope
Physicians: Dr. Keng Lam, M.D. and Dr. Mike Chen, M.D.
Specialty: NF1, Malignant Peripheral Nerve Sheath Tumors, and associated brain/spinal tumors
Facility Type: Adults, Children
Plastic Surgery
Phone: 626-385-4659
Location: 39 Congress St., Suite 402 Pasadena, CA 91105
Website: Panossian Plastic Surgery
Physicians: Andre Panossian, MD
Specialty: NF1, NF2
Facility Type: Plastic Surgery, Children, Adults
Comprehensive Neurofibromatosis Clinic
Phone: 323-361-2471
Location: 4650 Sunset Blvd., MS #82, Los Angeles, CA 90027
Website: Children's Hospital Los Angeles
Physicians: Clinic Director: Tena Rosser, MD Clinic Co-Director: Linda Randolph, MD, FAAP, FACMG
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult
Neurofibromatosis Clinic
Phone: 213-483-9930
Location: 1245 Wilshire Blvd., North & South Towers, Los Angeles, CA 90017
Website: PIH Health House Clinic
Physicians: William H. Slattery, III, MD and Gregory p. Lekovic, MD, PhD
Specialty: NF2, Schwannomatosis
Facility Type: Children, Adults, Outpatient clinic and surgery
Pediatric Neurofibromatosis
Phone: 1‑833-383-PEDS
Location: 8700 Beverly Blvd, Los Angeles, CA 90048
Website: Cedars-Sinai Medical Center
Physicians: Pedro A. Sanchez, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Adults, Children
Genomic Medicine Clinic
Phone: 916-703-0300
Location: 2825 50th Street Sacramento, CA 95817
Website: UC Davis Health - MIND Institute
Physicians: Clinic Director: Dr. Suma Shankar
Specialty: NF1, NF2, Schwannomas
Facility Type: Multi-Disciplinary, Adults, Children
Adult Genetics Clinic
Phone: 714-456-7002
Location: Pavilion 1, UCI Medical Center, 101 The City Drive, Orange, CA 92868
Website: UC Irvine Medical Center
Physicians: Clinic Director: Dr. Fuki Marie Hisama
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary; Adults
Genetics Clinic
Phone: (562) 728-5035
Location: 2801 Atlantic Ave., Long Beach, CA 90806
Website: Miller Children’s and Women’s Hospital
Physicians: Clinic Director: Natalie Gallant, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary; Children, Adult (case by case basis)
Stanford Neuroscience Health Center
Phone: 650-463-9315
Location: 213 Quarry Road, 1st Floor Palo Alto, CA 94304
Website: Stanford Health Center
Physicians: Clinic Director: John Day, ND, PhD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Adult
UCLA Multidisciplinary NF Clinic
Phone: (310) 825-5111 or email braintumor@mednet.ucla.edu
Location: 200 UCLA Medical Plaza, Suite 120, Los Angeles, CA 90095
Website: University of California, Los Angeles - UCLA
Physicians: Clinic Director: Phioanh (Leia) Nghiemphu, MD Clinic Scientific Director: Marco Giovannini, MD, PhD
Specialty: NF1, NF2, Schwannomatoisis
Facility Type: Multi-Disciplinary, Pediatric, Adults
Pediatric and Adult Neurology Clinic
Phone: 855-722-8273- Pediatric 415-353-7500- Adult
Location: 1825 Fourth St., Fifth Floor, 5A, San Francisco, CA 94158- Pediatric 400 Parnassus Avenue, Floor 8, San Francisco, CA 94143- Adult
Website: UCSF - University of California, San Francisco
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Children, Adults
CHOC Neurofibromatosis Program
Phone: 714-288-3500 or 888-457-1362
Location: 1201 W. La Veta, Orange, CA 92868
Website: Children's Hospital Orange County (CHOC)
Physicians: Clinic Director: Neda Zadeh,MD, Pediatric Genetics
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric
Stanford Pediatric NF Center
Phone: (650) 497-8953
Location: 725 Welch Road, Suite 160, Palo Alto, CA 94304
Website: Stanford/Lucile Packard Children's Hospital
Physicians: Clinic Co-Director: Cynthia Campen, MD Clinic Co-Director: David A. Stevenson, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pedatric and Adult
Neurofibromatosis Clinic
Phone: 501-830-1474 or 501-475-1183
Location: 1 Children's Way, Little Rock, AR 72202
Website: Arkansas Children's Hospital
Physicians: Gregory Sharp, MD, Elizabeth Sellars, MD, (Medical Director) Kevin Bielamowicz, MD, Adrianne Parkey, MD; Aurielle Westfall (NF Clinic Nurse Coordinator)
Specialty: NF1
Facility Type: Pediatric
UAB Neurofibromatosis Clinic
Phone: 205-934-4983 or 866-822-4362
Location: 720 20th Street South, Kaul 230, Birmingham, AL 35233
Website: University of Alabama at Birmingham
Physicians: Clinic Director: Rebecca Brown, MD, PhD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric and Adult
Clinical Genomics
Phone: 480-342-6263
Location: 5777 E. Mayo Blvd. Phoenix, AZ 85054
Website: Mayo Clinic Hospital - Phoenix
Physicians: Clinical Director: Mayoa (Mayo) A. Osundiji, MBBS, PhD Clinical Co-Director: Maciej M Mrugal, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pedatric and Adults
Neurofibromatosis Clinic
Phone: Scheduling: 602-933-0063 Inquiries: 602-933-5468
Location: 1919 E Thomas Rd, Phoenix, AZ 85016
Website: Phoenix Children's Hospital
Physicians: 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.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatric
Department of Genetics Birmingham , AL
Phone: 205-934-4983
Location:
Website: University of Alabama at Birmingham
Physicians: Bruce R. Korf, MD, PhD
Specialty: NF1, NF2, Schwannomatosis, Adults, Children
Facility Type: Multi-Disciplinary, NF Consortium
University of Oklahoma NF Clinic
Phone: 405-271-4211 or 405-271-8685
Location: OU Children's Physicians Building, 1200 Children's Avenue, Suite 5100, Oklahoma City, OK 73104
Website: University of Oklahoma Health Sciences Center
Physicians: Clinic Director: Danielle DeMarzo, MD; Clinic Co-Director: Rene Y. McNall-Knapp, MD
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Adults, Children
Neurofibromatosis Center
Phone: 216-636-5860 or 216-445-8179
Location: 9500 Euclid Avenue, Cleveland, OH 44195
Website: Cleveland Clinic
Physicians: Clinic Director: Gary Hsich, MD; Clinic Coordinator: Kristin Hackeman, BSN, RN, CPEN
Specialty: NF1, NF2
Facility Type: Multi-Disciplinary, Adults, Children
Comprehensive Neurofibromatosis Center
Phone: 410-502-6732
Location: Johns Hopkins Outpatient Center, 601 N. Caroline St, 5th floor, Baltimore, MD 21287 Additional Location: Johns Hopkins Greenspring Station, Pavilion II 10753 Falls Road, Suite 115, Lutherville, MD 21093
Website: The Johns Hopkins Hospital
Physicians: Jaishri Blakeley, MD; Allan Belzberg, MD; Carlos Romo, MD; Stephanie Morris, MD; Shannon Langmead, NP
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Adults, Children
Harold C. Simmons Comprehensive Cancer Center
Phone: 214-456-2382 (Pediatrics) or 214-645-8800 (Adults)
Location: 1935 Medical District Drive, Dallas, TX 75235
Website: UT Southwestern/Children’s Health Dallas
Physicians: Laura Klesse, MD, PhD (children) and Justin Jordan, M.D., M.P.H. (adults); Clinic Coordinator: Alexis Kennedy, PNP
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Children, Adults
The Neurofibromatosis Center of New Jersey
Phone: 973-972-9106
Location: 140 Bergen Street; Level G, Newark, NJ 07103
Website: Rutgers New Jersey Medical School
Physicians: Caroline Hayes-Rosen, MD (Pediatarics); Clinic Coordinator: Christina Kresge, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
The Gilbert Family Neurofibromatosis Institute
Phone: 202-476-3611 or 202-476-2120
Location: 111 Michigan Avenue, NW Washington, DC 20010
Website: District of Columbia - Children's National Health System
Physicians: Roger Packer, MD, Director; Clinic Coordinator: Jennifer Ramos-Blanco (202-476-5181)
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, NF Consortium, Adults, Children
Neurofibromatosis Clinic
Phone: 503-944-5970
Location: 501 N Graham Street Suite 330B, Portland, OR 97227
Website: Randall Children’s Hospital at Legacy Emanuel
Physicians: 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.)
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
The ColumbiaDoctors Neurofibromatosis (NF) Program
Phone: 212-342-3587
Location: 180 Fort Washington Avenue, 5th Floor, New York, NY 10032
Website: Columbia University Irving Medical Center
Physicians: Gurcharanjeet Kaur, MD, Director of NF Program; Clinic Coordinator: Kaleah Miller
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Adults, Children
Multidisciplinary Neurocutaneous Syndromes Clinic
Phone: 216-844-1443 or 216-844-3691
Location: 11100 Euclid Ave, Cleveland, OH 44106
Website: UH Rainbow Babies and Children's Hospital
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Comprehensive Neurofibromatosis Specialty Clinic
Phone: 816-302-9005
Location: 2401 Gillham Rd Kansas City, MO 64108
Website: Children’s Mercy Hospital
Physicians: 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.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Washington University Neurofibromatosis (NF) Center
Phone: 314-454-6120
Location: One Children's Place, St. Louis, MO 63110
Website: Washington University School of Medicine in St. Louis
Physicians: 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)
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, NF Consortium, Adults, Children
VICC Neurofibromatosis Clinic
Phone: 615-936-8422 or 615-343-0927
Location: Village at Vanderbilt, Suite 2500 1500 21st Avenue, Nashville, TN 37212
Website: Vanderbilt University Medical Center/Vanderbilt-Ingram Cancer Center
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Neurofibromatosis Clinic
Phone: 801-213-3599 (fax# for referrals: 801-587-7539)
Location: 81 N Mario Capecchi Dr, Salt Lake City, UT 84113
Website: University of Utah
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, NF Consortium, Adults, Children
Comprehensive Neurofibromatosis Clinic
Phone: 330-543-8050
Location: 215 West Bowery Street, Level 4 Akron, OH 44308
Website: Akron Children’s Hospital
Physicians: Erin Wright, MD and Matthew Ginsberg, MD; Clinic Coordinator: Katie Wilhelm (The clinic sees new patients up to age 21)
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
UH Seidman Cancer Center
Phone: 216-368-5693 - Oncology Administrator: Jessica Tripp
Location: 11100 Euclid Ave, Cleveland, OH 44106
Website: UH Cleveland Medical Center
Physicians: Herbert Newton, MD, FAAN, Medical Director, Neuro-Oncology Program and Brain Tumor Institute, UH CMC and Seidman Cancer Center
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Teens
Helen DeVos Children's Hospital Children's Outpatient Center
Phone: INFORMATION: 616-391-3699 FAX: 616-391-2505
Location: 330 Barclay NE, Suite 203 Grand Rapids, MI 49503
Website: NF Clinic Grand Rapids
Physicians: 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.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
A. Alfred Taubman Health Care Center
Phone: 734-936-7010 Fax: 734-936-9294
Location: 1500 E Medical Center Dr Floor 2 Reception G Ann Arbor, MI 48109
Website: University of Michigan Neurosurgery
Physicians: Dr. B. Gregory Thompson, neurosurgeon
Specialty: NF2
Facility Type: Adults, Children
The Medical Genetics Clinic
Phone: 734-763-2532
Location: 24 Frank Lloyd Wright Dr. GPS: 4029 Ave Maria Drive Lobby C, Suite 1300, Ann Arbor, MI 48105
Website: University of Michigan - Adult Genetics
Physicians: 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.
Specialty: NF1, Schwannomatosis
Facility Type: Adults
Neurology and Neuro-Oncology
Phone: 313-916-2723 Fax: 313-916-7139
Location: Detroit, MI 48202
Website: Henry Ford Health System NF Clinic
Physicians: Tobias Walbert, MD, PhD, MPH, Neuro-Oncology
Specialty: NF1, Schwannomatosis
Facility Type: Adolescents, Adults
McBrien Pediatric Neurology - Royal Oak
Phone: 248-551-3302
Location: 3555 W 13-Mile Rd Royal Oak, MI 48073
Website: Corewell Health East - NF Clinic
Physicians: Heather Little, DO, neurology; Kate Gowans, MD, hematology-oncology; Sue Burke, RN, BSN, CPN, Clinical Nurse Coordinator
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Comprehensive NF Center
Phone: 212-263-9695
Location: 160 East 32nd Street, Level L3 Medical, 2nd Floor, New York, NY 10016
Website: NYU Langone Heath
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Major Academic Medical Center, Adults, Children
The Cincinnati Neurofibromatosis Clinic
Phone: 513-636-8826 or 513-636-1861
Location: 3333 Burnet Ave, Division of Human Genetics, ML 4006 Cincinnati, OH 45229
Website: Cincinnati Children's Hospital Medical Center
Physicians: Center Director: Elizabeth Schorry, MD; Carlos Prada, MD; Clinic Coordinator Geri Kelly, BSN, RN, CPN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Pediatric NF Clinic at VCU
Phone: 804-628-5357
Location: 1000 East Broad Street, Richmond, VA 23219
Website: Children’s Hospital of Richmond at VCU
Physicians: Zhihong Joanne Wang, MD; Clinic Coordinator: Jill Farrar, RN, MSN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Pediatrics, Clinic sees NF patients until age 22 years.
Neurofibromatosis Clinic
Phone: 716-323-6170
Location: 818 Ellicott Street, Buffalo, New York, 14263
Website: John R. Oishei Children's Hospital
Physicians: Matthew Barth, MD (Neuro-oncology) and Veetai Li, MD (Neurosurgery); Michelle Ventola, Program Specialist, MVentola@kaleidahealth.org
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children to age of 21
Click on state of Washington - University of Washington Medical Center - Montlake regarding televisits available for Hawaii.
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
www.nfnetwork.org
admin@nfnetwork.org
Click on state of Washington - University of Washington Medical Center - Montlake, regarding televisits available for Wyoming.
For information, please contact:
NF North Central
Connect with us by clicking here.
http://nfnorthcentral.nfnetwork.org
For information, please contact:
NF North Central
Connect with us by clicking here.
http://nfnorthcentral.nfnetwork.org
Click on state of Washington - University of Washington Medical Center - Montlake, regarding televisits available for Idaho.
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630-510-1115
www.nfnetwork.org
admin@nfnetwork.org
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
www.nfnetwork.org
admin@nfnetwork.org
Alvord Brain Tumor Center - Neurology
Phone: 206-598-2282
Location: 1959 NE Pacific St., Pacific Tower, 7th Flr, EE728, Box 356182, Seattle, WA 98195
Website: University of Washington Medical Center - Montlake
Physicians: 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.)
Specialty: NF1, NF2
Facility Type: Adults
Neurofibroma and Operative Plexiform Removal
Phone: 469-598-2400
Location: 3108 Midway Rd., Suite 102, Plano, TX 75093
Website: Vida Bela Plastic Surgery
Physicians: Chelsea Snider, MD, Director of Vida Bela Plastic Surgery | Plastic, Reconstructive, & Craniofacial Surgery | Fax: 469-598-2399 | Email: info@vidabelaplasticsurgery.com
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Adult Neurofibromatosis Clinic
Phone: 716-845-1508
Location: Elm & Carlton Streets Buffalo, NY 14263
Website: Roswell Park Comprehensive Cancer Center
Physicians: Director: Lindsay Lipinski, M.D.; Nurse Coordinator: Mary Rose Vater; Social Worker: Bethann Levin
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults
Neurofibromatosis Clinic
Phone: 212-639-5948 (Pediatric Neuro-oncology Services); 212-639-6767 (Adult Neuro-oncology Services)
Location: 1275 York Avenue, New York, NY 10065
Website: Memorial Sloan Kettering NF Program
Physicians: Matthias A. Karajannis, MD, MS (Pediatric Neuro-oncology Services), Anna Piotrowski, MD (Adult Neuro-oncology Services)
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Adults, Children
Neurosurgery
Phone: 570-271-6437
Location: 100 North Academy Avenue, Danville, PA 17822
Website: Geisinger Medical Center - Neurosurgery
Physicians: Anne Marie Morse, DO, Director of Pediatric Neurology; Clinic Coordinator: Brianna Porreca BSN, RN, Pediatric Neurosurgery Nurse Navigator - (Clinic Schedule: half day, monthly)
Specialty: NF1, NF2
Facility Type: Children, Adults, Multi-Disciplinary
Neurocutaneous Syndrome Clinic
Phone: 877-925-3637 (1-877-YALE MDS)
Location: 20 York Street, New Haven, CT 06520
Website: Yale New Haven Hospital
Physicians: 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
Specialty: NF1, NF2, Tuberous Sclerosis
Facility Type: Pediatrics to Young Adult; Multi-Disciplinary
Neurofibroma and Operative Plexiform Removal Division of Adult Plastic Surgery, Department of Surgery
Phone: 713-798-6141
Location: 1977 Butler Blvd, Suite E6.100, Houston, Texas, 77030
Website: Baylor College of Medicine
Physicians: Sebastian Winocour, MD, MSc, FACS, Baylor College of Medicine, Division of Plastic Surgery
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults
Neurofibromatosis Clinic
Phone: 832-822-4280
Location: 6701 Fannin, 16th Floor, Houston, TX 77030
Website: Texas Children’s Hospital/Baylor College of Medicine
Physicians: William Craigen, MD, PhD; Clinic Coordinator: Katie M. Chan, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
NF/RASopathy Center
Phone: 414-607-5280 or 414-266-3347 or 414-266-3352
Location: 9000 W. Wisconsin Avenue, MS716, Milwaukee, WI 53226
Website: Children’s Wisconsin
Physicians: Donald Basel, MD and Leah Lalor, MD/Dermatology; Clinic Coordinator: Lisa Koneazny, RN, BSN
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Children, Adults for initial consult
NF2 Clinic - Hearing and Balance Program
Phone: 614-366-3931 (NF2); 614-293-4448 (NF1)
Location: The Ohio State Eye and Ear Institute; 915 Olentangy River Road, Suite 4000, Columbus, OH 43212
Website: The Ohio State University Wexner Medical Center
Physicians: (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
Specialty: NF1, NF2
Facility Type: Adults, Children
Nerve Center
Phone: 503-494-4314
Location: 3303 S. Bond Avenue, Portland, Oregon 97239
Website: Oregon Health & Science University
Physicians: Kim J. Burchiel, M.D., F.A.C.S.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Genetics and Birth Defects Clinic at Doernbecher
Phone: 503-494-8307
Location: 707 S.W. Gaines Street, Portland, Oregon 97239
Website: Oregon Health & Science University
Physicians: Kory Keller, M.S., C.G.C.
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
www.nfnetwork.org
admin@nfnetwork.org
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
www.nfnetwork.org
admin@nfnetwork.org
For information, please contact:
NF Network
PO Box 1530
Wheaton, IL 60187
630.510.1115
Pediatric Neurosurgery
Phone: 605-312-8500
Location: 1210 W. 18th Street, Suite 100, Sioux Falls, SD 57104
Website: Sanford Health
Physicians: Eric Trumble, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Le Bonheur Outpatient Center - Genetics
Phone: 866-870-5570
Location: 51 N. Dunlap St., 4th Floor, Memphis, TN 38105
Website: Le Bonheur Children's Hospital
Physicians: Eniko K. Pivnick, MD, Geneticist; Andrei V. Alexandrov, MD, Chairman, Dept. of Neurology
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Neurofibromatosis Clinic
Phone: 682-885-2500
Location: 1500 Cooper Street, Fort Worth, Texas 76104
Website: Cook Children's Health Care System
Physicians: Jeffery C. Mcglothlin, MD
Specialty: NF1, NF2
Facility Type: Children
Pediatric Neurofibromatosis Clinic
Phone: 855-690-2446 or 888-609-1512
Location: 1515 Holcombe Blvd., Houston, TX 77030
Website: The University of Texas MD Anderson Cancer Center Children’s Cancer Hospital
Physicians: John Slopis, MD, MPH and Zsila Sadighi, MD; Clinic Coordinator: Rachel Bingham, APN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children, Adults
Neurofibromatosis Clinic
Phone: 412-692-5520
Location: 4401 Penn Avenue, Pittsburgh, PA 15224
Website: Children's Hospital of Pittsburgh of UPMC
Physicians: Kathy Gardner, MD; Jenna Gaesser, MD; Clinic Coordinator: Beth Heuer, CRNP
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
University of Pennsylvania Neurofibromatosis Clinic
Phone: 215-590-7012 (Children) or 215-662-4740 (Adults)
Location: 3501 Civic Center Blvd, Philadelphia, PA 19104
Website: Children's Hospital of Philadelphia
Physicians: Director, NF Program: Michael Fisher, MD; Medical Director, NF Pediatric Program Rachel Hachen, MD, MPH; Clinical Coordinator: Clinical Coordinator: Andrea Rennie, RN, BSN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Van Dyke Cancer Center
Phone: 414-298-7250
Location: 2350 N Lake Dr. Ste G01 Csm Cancer Center-milwaukee, Milwaukee, WI 53211-4528
Website: Ascension Columbia St. Mary's Milwaukee
Physicians: Clinic Director: Hendrikus Krouwer, MD
Specialty: NF1, NF2, Schwannamatosis, Adults, Children
Facility Type:
Comprehensive Pediatric Neurocutaneous Disorders Clinic
Phone: 608-263-6420 "option 3"
Location: 1675 Highland Avenue, Madison, WI 53792
Website: University of Wisconsin/American Family Children's Hospital
Physicians: Diane Puccetti, MD; Clinic Coordinator: Kathleen Herfel, CPN
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Children
Neurofibromatosis Clinic
Phone: 614-722-3538
Location: 700 Children's Drive Columbus, OH 43205
Website: Nationwide Children's Hospital
Physicians: Murugu Manickam, MD; Clinical Coordinator: Emily Sites, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
For information, please contact:
NF Central Plains
9218 Metcalf, Suite 335
Overland Park, KS 66212
University of Minnesota Neurofibromatosis Clinic
Phone: 612-365-8100
Location: 2450 Riverside Ave., Minneapolis, MN 55454
Website: M Health - University of Minnesota Medical Center and Masonic Children's Hospital
Physicians: Chris Moertel, MD; Kathy Sommer, MS, RN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adult, Children
For information, please contact:
NF Northeast
9 Bedford Street
Burlington, MA 01803
781.272.9936
For information, please contact:
NF Northeast
9 Bedford Street
Burlington, MA 01803
781.272.9936
Otology & Neurotology
Phone: 212-263-5565
Location: New York
Website: New York University Division of Otology and Neurotology
Physicians: Chairman of the Dept: J. Thomas Roland, Jr. FACS
Specialty: NF2
Facility Type: NF2 Major Medical Center
Neurology
Phone: Children (under 18 years of age) 585-275-2808; Adult: 585-341-7500
Location: 601 Elmwood Ave, Box 631, Rochester, NY 14642
Website: Golisano Children's Hospital at University of Rochester Medical Center
Physicians: Alex Paciorkowski, MD, Division Chief, Neurogeneticist; Clinic Coordinator: Carolyn Dickinson, PNP
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
For information, please contact:
NF Northeast
9 Bedford Street
Burlington, MA 01803
781.272.9936
UNC Neurofibromatosis Clinic
Phone: 984-974-1401 or 919-966-8165
Location: 101 Manning Drive, Chapel Hill, NC 27517
Website: University of North Carolina Hospitals
Physicians: Robert S Greenwood, MD and Timothy Gershon, MD, PhD; Clinic Coordinator: Betty Allen, BSN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Duke Comprehensive Neurofibromatosis Clinic
Phone: 919-525-3395
Location: 2301 Erwin Road, Durham, NC 27710
Website: Duke University Medical Center
Physicians: Director: David Van Mater, MD, PhD; Co-Director: Kirsten Schroeder, MD, MPH; Clinic Coordinator: Monica Austin
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Children, Adults
Neurofibromatosis Center at Montefiore
Phone: 718-920-4378 or 718-714-2342
Location: 3415 Bainbridge Ave, Bronx, NY 10467
Website: Children's Hospital at Montefiore
Physicians: Adam S. Levy, MD, Genetics; Marcela DelRio, MD, Nephrologist; Fatema Malbari, MD, Child Neurologist & Neuro-Oncologist; Linda Lightstone, Social Worker
Specialty: NF1, NF2
Facility Type: Children to age of 21
For information, please contact:
NF Central Plains
9218 Metcalf, Suite 335
Overland Park, KS 66212
For information, please contact:
NF North Central
Connect with us by clicking here.
http://nfnorthcentral.nfnetwork.org
Neurofibromatosis Multidisciplinary Clinic
Phone: 336-716-4101
Location: Medical Center Boulevard, Winston-Salem, NC 27157
Website: Wake Forest Baptist Health
Physicians: Tamison Jewett, MD Clinic Director; David Kram, MD, Co-Director; Roy Strowd, MD, Co-Director
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, Adults, Children
Phone: 917-492-4200
Location: New York
Website: Weinberg Plastic Surgery
Physicians: Hubert Weinberg, MD
Specialty: Electrodessication
Facility Type:
Pediatric Oncology Branch
Phone: 240-760-6560
Location: Building 10, Room 1W-3750, Bethesda, MD 20892
Website: National Cancer Institute
Physicians: Brigitte C. Widemann, MD, Chief, Pediatric Oncology Branch
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Multi-Disciplinary, Children
Neurofibromatosis Clinic
Phone: 617-724-7856
Location: 55 Fruit Street, Boston, MA. 02114
Website: Massachusetts General Hospital
Physicians: Scott Plotkin, MD, Neurosurgical Oncologist, Neurologist; Justin Jordan, MD, MPH; Ann Slater, RN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Multi-Disciplinary, NF Consortium, Adults, Children
Pediatric Multidisciplinary Neurofibromatosis Program
Phone: 617-355-6394 (NF1) and 617-355-6388 (NF2)
Location: 300 Longwood Ave, Boston, MA 02115
Website: Boston Children's Hospital
Physicians: 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
Specialty: NF1, NF2
Facility Type: Multi-Disciplinary, NF Consortium, Children
Children's Hospital Neurofibromatosis Clinic
Phone: 504-896-9254
Location:
Website: Louisiana State University and Children's Hospital New Orleans
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Department of Clinical Genomics - Neurofibromatosis Clinic
Phone: 507-284-8198 or 800-533-1564 referring physician line
Location: 200 First St. SW, Rochester, MN 55905
Website: Mayo Clinic
Physicians: Dusica Babovic-Vuksanovic, MD, FAAP, FACMG; Connie Kruger, RN and Laura Fisher, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Neurocutaneous Syndromes Clinic
Phone: 612-813-7240
Location: 2530 Chicago Ave South, Minneapolis, MN 55404
Website: Children's Hospitals and Clinics of Minnesota
Physicians: Marcelo Vargas, MD and Elizabeth Siqveland, APRN-CNP; Clinic Coordinator: Dinel Pon, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Neurofibromatosis Diagnostic and Treatment Center
Phone: 973-754-4503
Location: 703 Main Street, Paterson, NJ 07503
Website: St. Joseph's Regional Medical Center
Physicians: Directors: Punita Gupta, MD, FAAP, FACMG and Romana Kulikova, MD, FAAP; Clinic Coordinator: Lorien King, MS, LCGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Genetics
Phone: 617-636-5454
Location: 860 Washington Street South Building, 2nd Floor, Boston, MA 02111
Website: Tufts Medical Center
Physicians: 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
Specialty: NF1, NF2, Schwannamatosis
Facility Type: Adults, Children
Neurofibromatosis Clinic
Phone: 314-577-5397
Location: 1465 South Grand Blvd, St. Louis, Missouri 63104
Website: SSM Health Cardinal Glennon Children's Hospital
Physicians: Amelia Kirby, MD (Director - Genetics); Ali Jamal, MD (Neurology); Thomas Geller, MD; Clinic Coordinator: Julie Engel, RN
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Neurofibromatosis Clinic and Brain Tumor Program
Phone: 518-262-5513
Location: 43 New Scotland Avenue, Albany, New York 12208
Website: Albany Medical Center
Physicians: 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
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Neurology Clinic
Phone: 206-987-2016 or toll-free: 844-935-3467
Location: 4800 Sand Point Way NE, Seattle, WA 98105
Website: Seattle Children's Hospital
Physicians: Aimee Sato, MD, Neurology
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Children
Weisskopf Child Evaluation Center
Phone: 502-588-0888
Location: 411 E. Chestnut Street 2nd Level, Check-in Louisville, KY 40202
Website: University of Louisville Neurofibromatosis Clinic
Physicians: Clinic Director: Alexander Asamoah, MD, PhD; Clinic Coordinator: Kelly Jackson, MS, CGC
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Kentucky Neuroscience Institute Neurofibromatosis Clinic
Phone: 859-323-5661 or 859-218-5011
Location: 740 S. Limestone First Floor, Wing C, Room B101, Lexington, KY 40536
Website: University of Kentucky
Physicians: Donita D. Lightner, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
Neurodevelopmental Outreach Clinic
Phone: 907- 264-6281
Location: 3601 C Street, Suite 322, Anchorage, AK 99503
Website: Alaska Department of Health and Social Services - Division of Public Health
Physicians: Ms. Wahlira
Specialty: Genetic Disorders
Facility Type: Children
Neurology
Phone: 602-687-8555
Location: 3330 N 2nd St., Ste 402, Phoenix, AZ 85012
Website: Arizona Pediatric Neurology & Neurogenetics Associates
Physicians: Vinodh Narayanan, MD
Specialty: NF1, NF2, Schwannomatosis
Facility Type: Adults, Children
C.S. Mott Children's Hospital - Pediatric Genetics
Phone: 734-764-0579 Fax: 734-763-6561
Location: 1540 E. Hospital Dr., Level 6, Reception C, Ann Arbor, MI 48109-5718
Website: University of Michigan Pediatric Genetics
Physicians: Jeffrey Innis, MD; Catherine Keegan, MD
Specialty: NF1
Facility Type: Children
Phone: (800) 926-8273
Location:
Website: University of California San Diego (UCSD) Health
Physicians:
Specialty: NF1, NF2, Schwannomas
Facility Type: Children, Adults, Multi-Disciplinary
For information, please contact:
NF Northeast
9 Bedford Street
Burlington, MA 01803
781.272.9936