CLINICAL EXPERTISE, COMPREHENSIVE EVALUATION AND CARE, INFORMATION CRUCIAL FOR CLINICAL TRIALS
CMTA’s community-led, community-driven mission is to support the development of new treatments for Charcot-Marie-Tooth disease (CMT), to improve the quality of life for people with CMT, and, ultimately, to find a cure. One of the many ways we implement this mission is by sponsoring patient-focused, multi-disciplinary Centers of Excellence CMT clinics. Each CMTA Center of Excellence is staffed by world-renowned expert CMT physicians, clinicians, and researchers. Children, adults, and families affected by CMT can be assured they’ll receive only the best comprehensive care by a team of CMT experts through the expert care available at these CMTA-affiliated clinics.
What is a CMTA Center of Excellence?
A CMTA Center of Excellence is a CMT clinic sponsored by CMTA. CMTA does not directly operate or manage any clinic. Instead, CMTA awards the doctor who is the clinic director or co-director with the CMTA Center of Excellence designation. CMTA does not accredit or designate any physical location or healthcare center as a Center of Excellence.
A doctor who CMTA has awarded a Center of Excellence designation to is a CMT expert who has undergone a very comprehensive and strenuous review and approval process that ensures the doctor meets CMTA’s very high standards for providing expert care to individuals who have or are suspected of having CMT. CMTA’s review process not only tests the doctor’s CMT knowledge, but any doctor who applies for CMTA Center of Excellence designation must also pass the scrutiny of our own CMT Clinical Expert Board (CEB).
Where are CMTA Centers of Excellence CMT Clinics Located?
There are dozens of CMTA Centers of Excellence CMT clinics located throughout the US, with additional Centers of Excellence in Australia, Belgium, England, and Italy. Each Center of Excellence is independently operated by the facility where the clinic is located, and the director and/or co-director of each clinic is the doctor who CMTA awarded the Center of Excellence designation.
What Kind of Care Will You Receive at a CMTA Centers of Excellence CMT Clinic?
Each CMTA Center of Excellence CMT clinic is an independently operated clinic that provides comprehensive multi-disciplinary care for individuals who have CMT. Some CMTA-affiliated clinics can only offer care for adult patients, some can only offer care for pediatric patients, and some are able to offer care for the entire family regardless of age. No matter the clinic, each provides only the best expert care from a team of highly qualified CMT care specialists available nowhere else.
How Do You Schedule an Appointment at a CMTA Centers of Excellence CMT Clinic?
Below, you will find a list of all CMTA Centers of Excellence CMT clinics. Each includes the name of the clinic director and/or co-director who CMTA has awarded the Center of Excellence designation, the contact information for scheduling an appointment, the clinic’s location, and the services each clinic is able to provide to its CMT patients.
Because each CMTA Center of Excellence is independently operated, each might have its own requirements for scheduling an initial appointment. Also, each might have more than one doctor in the clinic, but only the listed clinic director and/co-director has been designated as the CMTA Center of Excellence; and CMTA recognizes only the clinic director or co-director as a CMT expert. For this reason, when calling the clinic of your choosing, make sure to ask for an appointment with the doctor who is listed below as the clinic director or co-director.
What Happens if my Center of Excellence Doctor Relocates?
Sometimes, providers relocate for many different reasons. When a doctor relocates, the doctor takes CMTA’s Center of Excellence designation with them. Because CMTA does not designate a physical location or clinic as a Center of Excellence and does not operate any clinic, the specific location will not remain a Center of Excellence unless there is a clinic co-director with the designation or if the location has a doctor take over and this new doctor applies for and receives CMTA’s Center of Excellence designation.
Why Choose a CMTA Centers of Excellence CMT Clinic?
Anybody who receives care from a CMTA Centers of Excellence CMT clinic is being treated by the best of the best in CMT patient care. While CMT doesn’t yet have an available treatment, the highly trained CMT experts who CMTA has awarded the Centers of Excellence designation have the specialized expertise and skill needed for managing and treating the many symptoms of CMT. Together with each clinic director’s specialized support staff, CMTA Centers of Excellence offer a level of care available nowhere else. In addition to receiving expert care, these clinics offer opportunities to participate in critically needed CMT research, including CMTA-supported research conducted by the Inherited Neuropathies Consortium (INC).
CMTA Partners with the Inherited Neuropathies Consortium
CMTA has many research and biopharma industry partners in our unwavering drive to bring treatments and ultimately a cure for CMT. One such research partner is the INC. The INC is an integrated group of academic medical centers, patient support organizations, and clinical research resources dedicated to conducting clinical research into the many types of CMT.
Through their research, the INC’s mission is to improve the care of those who are living with CMT. Additionally funded by the National Institutes of Health (NIH), the INC is a member of the Rare Diseases Clinical Research Network (RDCRN).
How Does CMTA and the INC Conduct CMT Research?
Through CMTA Centers of Excellence CMT clinics, and with CMTA funding support, the INC conducts research in affiliated CMTA Centers of Excellence by collecting and recording genetic, biologic, and other relevant data from patients at the clinic who wish to voluntarily participate in the various CMTA-supported INC research projects. Only patients who wish to participate in research will be included. Participation is voluntary and is very appreciated, but participation in research is not required to receive the expert care available at the clinic.
Do All CMTA Centers of Excellence CMT Clinics Participate with INC Research?
Approximately one-half of all CMTA Centers of Excellence are affiliated with the INC and participate in CMTA-supported INC research projects. Each of these clinics are denoted with an asterisk (*). Whether a CMTA Centers of Excellence CMT clinic is affiliated with the INC does not change the level of expert care available to those who are living with CMT. The same level of care from highly trained and skilled CMT experts is available at each CMTA-sponsored CMT clinic.
How Do You receive a CMTA Center of Excellence Designation?
CMTA is actively seeking healthcare providers who have highly skilled expertise that meets the demanding CMTA criteria for providing individuals who have CMT the specialized care they need and deserve. If you believe CMTA should award your healthcare provider with the prestigious CMTA Center of Excellence designation, please invite your provider to apply for the designation at the link below.
If you are a healthcare provider who wishes to receive a CMTA Center of Excellence designation, we would love to hear from you and invite you to apply for the designation at the link below. To apply for CMTA Center of Excellence designation, please follow this link: apply to receive CMTA COE designation.U.S. CMTA Centers of Excellence
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Arkansas
Services Provided:Clinical Director: Aravindhan Veerapandiyan, MD
Appointments: Tiffany Roby, 501-364-1850
Email: RobyTM@archildrens.org
Neurology (Pediatric)
Physiatrist
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Orthotist
Genetic Counselor
Social Worker/Psychologist
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California
Adult & Pediatric Services Provided:Cedars-Sinai Charcot-Marie-Tooth/Hereditary Neuropathy Center*
127 S San Vicente Blvd
Ste A6600
Los Angeles, CA 90048
Visit Clinic WebsiteClinical Director: Richard A. Lewis, MD, and Melody Badii, MD
Appointments: Tami Kendra, 310-423-4268
Email: nmprogram@cshs.org
Neurology
EMG/Nerve Conduction Studies
Orthopedic Surgery
Pulmonology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics
Clinical Research
Pediatric Services Provided:Clinical Directors: John Day, MD, PhD, and Ana Tesi Rocha, MD
Appointments: 650-723-0993
Neurology
Orthopedic Surgery
Occupational Therapy
Genetic Counseling
Speech/Language PathologyAdult Services Provided:Stanford Neuromuscular Program*
Stanford Neuroscience Health Center
213 Quarry Rd
Palo Alto, CA 94304
Visit Clinic WebsiteClinical Director: John Day, MD, PhD
Appointments: 650-723-6469
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Social Work/Counseling
Speech/Language PathologyAdult Services Provided:University of California, San Francisco
400 Parnassus Ave., 8th Floor
San Francisco, CA 94143
Visit Clinic WebsiteClinical Director: Mark Terrelonge, MD
Appointments: 415-353-2273
Neurology
Physical Therapy
Occupational Therapy
Orthopedic Surgery
Genetic Counseling
Podiatry
Orthotics
Pediatric Services Provided:University of California, San Francisco
1825 4th St, 6th Fl Ste A
San Francisco, CA 94158
Visit Clinic Website
Neurology
Physical Therapy
Physiatry
Occupational Therapy
Orthopedic Surgery
Genetic Counseling
Social Work/Counseling
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Colorado
Adult Services Provided:University of Colorado*
Department of Neurology
1635 Aurora Ct Ste 4200
Aurora, CO 80045
Visit Clinic WebsiteClinical Director: Vera Fridman, MD
Appointments: 720-848-2080
EMG/Nerve Conduction Studies
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Pulmonology
Social Work/Counseling
Clinical ResearchPediatric Services Provided:Clinical Director: Michele Yang, MD
Appointments: Hattie Foster, 720.777.2806
hattie.foster@childrenscolorado.org
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Social Work/Counseling
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Connecticut
Pediatric Services Provided:Connecticut Children’s Medical Center, Farmington*
505 Farmington Ave
Farmington, CT 06032
Visit Clinic WebsiteClinical Director: Gyula Acsadi, MD, PhD
Appointments: Nanci Stolgitis, RN 860-837-7500
Email: Nstolgitis@connecticutchildrens.org
Pediatric Neurology
Physiatry
Orthopedic Surgery
Physical Therapy
Orthotics/Prosthetics
Occupational Therapy
Nutrition
Adult & Pediatric Services Provided:Clinical Director: Kevin J. Felice, DO
Appointments: Sharon McDermott, 860-612-6305
Email: smcdermott@hfsc.org
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Podiatry
Social Work/CounselingAdult Services Provided:Clinical Director: Sasha Zivkovic, MD
Appointments: 203-785-4085
Physiatry
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Neurology
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Florida
Adult Services Provided:Clinical Director: Christopher Lamb, MD
Appointments: 904-953-0856
Please note: When requesting an appointment, please specify that the diagnosis is CMT to be scheduled for an initial evaluation with one of our expert neuromuscular physicians.
Genetic Counseling
Neurology
Physical Therapy
Physiatry
Occupational Therapy
Social Work/Counseling
Pediatric Services Provided:Clinical Director: Omer Abdul Hamid, MD
Appointments: 407-650-7715
Email: rulla.starr@nemours.org
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition
Social Work/Counseling
Pediatric Services Provided:Clinical Director: Migvis Monduy, MD
Appointments: 786-624-2154
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotist (refer as needed)
Nutrition
Social Work/Counseling
Adult & Pediatric Services Provided:University of Florida
Norman Fixel Institute for Neurological Diseases
3009 SW Williston Rd
Gainesville, FL 32608
Visit Clinic WebsiteClinical Director: James Wymer, MD, PhD
Appointments: 352-294-5400
Neurology
Occupational Therapy
Orthotics/Prosthetics
Pain Management
Podiatry
Respiratory Therapy
Social Work/Counseling
Adult Services Provided:University of Miami*
Professional Arts Center
1150 NW 14th St Ste 609
Miami, FL 33136Clinical Director: Mario Saporta, MD
Appointments: 305-243-9173
Neurology
Physical Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling
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Illinois
Adult & Pediatric Services Provided:Northwestern Memorial Hospital
Department of Neurology
Peripheral Neuropathy/Division of Neuromuscular Disease
259 E Erie St
Chicago, IL 60611Clinical Director: Daniela Maria Menichella, MD, PhD
Appointments: 312-695-7950
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Physiatry
Physical Therapy
Social Work/Counseling
Adult & Pediatric Services Provided:University of Illinois at Chicago
Department of Neurology
1801 W Taylor St Ste 4 E
Chicago, IL 60612
Visit Clinic Website
Clinical Director: Charles K. Abrams, MD, PhD
Appointments:312-996-4780
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery*
Physiatry*
Physical Therapy
Podiatry*
Speech/Language Pathology
Social Work/Counseling
*Available by referralAdult & Pediatric Services Provided:Clinical Director: Ryan D. Jacobson, MD
Appointments: 312-942-4500
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry*
Physical Therapy
Podiatry*
Pulmonology
Social Work/Counseling
*Available by referralAdult & Pediatric Services Provided:Clinical Director: Raghav Govindarajan, MD
Appointments: 618-641-5803
Physical Therapy
Occupational Therapy
Orthotist
Social Worker
Orthopedic Surgery
Podiatry
Pulmonary
Cardiology
Podiatry
Pulmonology
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Indiana
Adult Services Provided:Indiana University School of Medicine (Neurology Clinic)
355 West 16th Street
Indianapolis, IN 46202
Visit Clinic Website
Clinical Director: Laurie Gutmann, MD
Appointments: 317-948-5450
Email: Wendy Iskander – wiskander@iu.edu
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotist
Physiatrist
Social Worker
Nurse Practitioner
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Iowa
Adult & Pediatric Services Provided:University of Iowa Hospitals & Clinics*
Boyd Tower, 2nd Fl
200 Hawkins Dr
Iowa City, IA 52242
Visit Clinic Website
Download Clinic Brochure: Iowa-COE-Clinic-Brochure_Feb2018.pdf
Neurology
Orthopedic Surgery
Physical Therapy
Pediatrics
Occupational Therapy
Genetic Counseling
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Kentucky
Adult Services Provided:Clinical Director: Zeng Y. Wang, MD, PhD
Appointments: Zahemy Claro Perez, 502-588-4800
Email: zahemy.claro@uoflhealth.org
Neurology
Genetic Counseling
Social Work/Counseling
Physical Therapy*
Podiatry*
Orthotics/Prosthetics*
*Available by referral
Adult Services Provided:University of Kentucky, Kentucky Neuroscience Institute
740 S. Limestone, Kentucky Clinic, First Floor, Wing C, Suite B101
Lexington, KY 40536
Visit Clinic Website
Neurology
Genetic Counseling
Physical Therapy
Other Services as Needed
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Maryland
Adult & Pediatric Services Provided:The Johns Hopkins CMT Center*
Department of Neurology
601 North Caroline Street
Baltimore, MD 21287
Visit Clinic WebsiteClinical Director: Charlotte Sumner, MD
Clinical Co-Director: Bipasha Mukherjee-Clavin, MD, PhD
Appointments: (Adult) 443-287-4623
(Pediatric) 410-955-4259
Contact: Theresa Cox thutson2@jhmi.edu
EMG/Nerve Conduction Studies
Genetic Counseling*
Neurology
Occupational Therapy
Orthotics/Prosthetics
Pediatrics
Physical Therapy
Pulmonology*
Clinical Research
*Available by referral
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Massachusetts
Adult & Pediatric Services Provided:Massachusetts General Hospital*
Neuromuscular Diagnostic Center
Charles River Plaza
165 Cambridge St Ste 820
Boston, MA 02114
Visit Clinic WebsiteClinical Director: Reza Seyedsadjadi, MD
Appointments: Tamika Scott, 617-726-3642
Email: tscott2@partners.org
Neurology
Physical Therapy
Genetic Counseling
Social Work/Counseling
Orthotics/Prosthetics
Clinical Research
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Michigan
Adult & Pediatric Services Provided:University of Michigan
MDA and CMT Clinic
2850 South Industrial Highway, Suite 400
Ann Arbor, MI 48104
Visit Clinic Website
Clinical Co-Director: Gary Gallagher, MD
Clinical Co-Director: Brett McCray, MD, PhD
Appointments: 734-936-9020
Neurology
Orthotics/Prosthetics
Physiatry
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Minnesota
Adult Services Provided:University of Minnesota Health Neurology Clinic at Fairview Maple Grove Medical Center*
14500 99th Ave N
Maple Grove, MN 55369Clinical Director: David Walk, MD
Appointments: 612-626-6688
Neurology
Physiatry*
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Orthotics/Prosthetics
Genetic Counseling
Social Work/Counseling*
Podiatry*
Nutrition*
EMG/Nerve Conduction Studies
*Available by referral
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Missouri
Adult & Pediatric Services Provided:Clinical Director: Dr. Vovanti Jones, MD
Appointments: 573-882-1515
Neurology
Physiatry
Orthopedic Surgery
Occupational Therapy
Orthotics/Prosthetics
Genetic Counseling
Adult & Pediatric Services Provided:Washington University School of Medicine, St. Louis
660 S Euclid Ave
St. Louis, MO 63110
Visit Clinic WebsiteClinical Director: Stefanie Geisler, MD
Appointments: 314-362-6981
Neurology
EMG/Nerve Conduction
Physical Therapy
Orthotics/Prosthetics
Social Work/Counseling
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Nebraska
Adult Services Provided:Chi Health Clinic Neurology Institute
6901 N. 72nd Street, Suite 2400
Omaha, Nebraska 68122
Visit Clinic Website
Clinical Director: Yu-Ting Chen, MD
Appointments: 402-717-0070
Neurology
Physical Therapy
Occupational Therapy
Nutrition
Orthotics/Prosthetics
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New Jersey
Adult & Pediatric Services Provided:Clinical Director: Florian Thomas, MD, PhD
Appointments: Maidhily Balakrishnan, 551-996-1324
Email: Maidhily.Balakrishnan@HMHN.org
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition
Social Work/Counseling
Orthotics/Prosthetics
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New York
Adult & Pediatric Services Provided:University of Rochester Peripheral Neuropathy/CMT Clinic*
University of Rochester Medical Center
Department of Neurology
601 Elmwood Ave (Box 673)
Rochester, NY 14642
Visit Clinic WebsiteClinical Director: David Herrmann, MD
Appointments: 585-275-2559
Email: CMT_Studies@urmc.rochester.edu
Neurology
Orthopedic Surgery
Physiatry*
Physical Therapy
Occupational Therapy*
Genetic Counseling†
Social Work/Counseling*
Orthotics/Prosthetics‡
*Available by referral
†By request prior to visit
‡Not at clinic; separate appointment required
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North Carolina
Adult & Pediatric Services Provided:Clinical Director: Rebecca Traub, MD
Appointments: 984-974-4401
Genetic Counseling
Neurology
Occupational Therapy
Orthopedic Surgery
Orthotics/Prosthetics*
Physiatry
Physical Therapy
Podiatry
*Available by referralAdult & Pediatric Services Provided:Clinical Director: Urvi Desai, MD
Appointments: 704-446-1900
Clinical Research
Genetic Counseling
Genetic Testing
Neurology
Nutrition
Occupational Therapy
Physiatry
Physical Therapy
Pulmonology
Respiratory Therapy
Social Work/Counseling
Speech Therapy
Pediatric Services Provided:Clinical Director: Natalie Katz, MD
Appointments: 919-613-6832, Trish Sexton / patricia.sexton@duke.edu; Shannon Riess / shannon.haymond@duke.edu
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery
Physical Therapy
Social Work
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Ohio
Adult & Pediatric Services Provided:Clinical Director: Zarife Sahenk, MD, PhD Appointments: 614-722-2203
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery*
Orthotics/Prosthetics*
Physiatry*
Physical Therapy
*Available by referralAdult & Pediatric Services Provided:Ohio State University
Wexner Medical Center
Martha Morehouse Outpatient Care
2050 Kenny Rd
Columbus, OH 43221
Visit Clinic WebsiteClinical Director: Michael Isfort, MD
Appointments: 614-293-4969
Genetic Counseling
Neurology
Occupational Therapy
Orthotics/Prosthetics
Physical Therapy
Podiatry
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Pennsylvania
Adult Services Provided:The CMTA Center of Excellence at the Perelman School of Medicine*
Hospital of the University of Pennsylvania
Perelman Center for Advanced Medicine, South Pavilion, 2nd Fl
3400 Civic Center Blvd
Philadelphia, PA 19104
Visitor Information
Visit Clinic WebsiteClinical Director: Steven Scherer, MD, PhD
Clinical Co-Director: Chafic Karam, MD
Office: 215-349-5313
Scheduling for Clinic Visits:
Kari Roberts, 215-662-3606
Kari.Roberts@pennmedicine.upenn.edu
Scheduling for Research Visits:
Pooja Patel, 215-898-0180
Pooja.Patel1@Pennmedicine.upenn.edu
Neurology
Physical Therapy
Occupational Therapy
Genetic Counseling
Pediatric Services Provided:Clinical Director: Ashutosh Kumar, MD
Scheduling for Clinic Visits:
Paula Cameron, 717-531-2908
pcameron@pennstatehealth.psu.edu
Neurology
Orthopedic Surgery
Physiatry
Physical Therapy
Occupational Therapy
Genetic Counseling
Orthotist
Pulmonology
Pediatric Services Provided:The CMTA Center of Excellence and Neuromuscular Program at the Children’s Hospital of Philadelphia*
Wood Building, 6th Floor
3401 Civic Center Blvd
Philadelphia, PA 19104
Directions and Parking
Visit Clinic WebsiteClinical Director: Sabrina Yum, MD
Appointments: Hannah Borger, Clinic Coordinator, 215-590-1719
Email: Neuromuscular@email.chop.edu
Neurology
Orthopedic Surgery
Physiatry*
Physical Therapy
Occupational Therapy
Genetic Counseling
Nutrition
*Available by referralPediatric Services Provided:Children’s Hospital of Pittsburgh
4401 Penn Ave 2nd Fl
Pittsburgh, PA 15224Clinical Director: Hoda Abdel-Hamid, M.D.
Appointments: 412-692-5520
Neurology
Physical Therapy
Genetic Counseling
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Texas
Adult Services Provided:Houston Methodist Hospital
6560 Fannin Scurlock Tower, 8th Floor
Houston, TX 77030
Visit Clinic WebsiteClinical Director: Jun Li, MD, PhD, FANA, FAAN
Appointments: Elisa Miller,713-363-7310, emiller@houstonmethodist.org
Neurology
Physical Therapy
Occupational Therapy
Orthotics
Social Work
Orthopedic Surgery
Adult Services Provided:Clinical Director: Yessar M. Hussain, MD
Appointments: 512-920-0140
Genetic Counseling
Neurology
Physiatry
Physical Therapy
Occupational Therapy
Orthotics/Prosthetics
Pediatric Services Provided:Children’s Health Dallas Speciality Center (UTSW)
2350 N Stemmons Fwy
Dallas, TX 75207
Visit Clinic WebsiteClinical Directors: Kaitlin Batley, MD
Appointments: 214-456-2768, option 2; option 1
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery
Physical Therapy
Social Work/Counseling
Adult (16+) Services Provided:Kane Hall Barry Neurology
1305 Airport Fwy Ste 205
Bedford, TX 76021
Second Location
4525 Heritage Trace Pkwy, Ste 117
Keller, TX 76244
Visit Clinic WebsiteClinical Director: Sharique Ansari, MD, MPH*
Appointments: 817-267-6290, option 4
Genetic Counseling
Neurology*
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Orthopedic Surgery
Physiatry
Physical Therapy
Podiatry
Social Work/Counseling
*Please note: Dr. Ansari is the only neurologist at Kane Hall Barry involved in diagnosing and treating CMT.
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Utah
Adult & Pediatric Services Provided:Clinical Director: Russell Butterfield, MD, PhD
Appointments: 801-585-7575
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthotics/Prosthetics
Physiatry
Pulmonology
Respiratory Therapy
Pediatric Services Provided:Clinical Director: Russell Butterfield, MD, PhD
Appointments: 801-213-7756
Email: danica.hobson@hsc.utah.edu
Genetic Counseling
Neurology
Nutrition
Orthopedic Surgery
Physiatry
Physical Therapy
Speech Language Pathology
Social Work/Counseling
Pediatric Services Provided:Clinical Director: Russell Butterfield, MD, PhD
Appointments: 801-536-3564
Genetic Counseling
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery
Orthotics
Physical Therapy
Speech Language Pathology
Social Work/Counseling
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Virginia
Adult and Pediatric Services Provided:Virginia Commonwealth University
11958 W Broad Street
Henrico, VA, 23233
Visit Clinic Website (Link Coming in January 2025)Clinical Director: Nicholas Johnson, MD
Appointments: Kendall Rodier, 804-828-9571
Email: kendall.rodier@vcuhealth.org
Neurology
Physiatry
Physical Therapy
Genetic Counseling
Orthopedic Surgery
Social Worker
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Washington
Adult Services Provided:Neurology Clinic at University of Washington Medical Center*
1959 NE Pacific St, 8th Fl
Seattle, WA 98195
Visit Clinic WebsiteClinical Director: Michael Weiss, MD
Appointments: Gail Schessler, Clinic Coordinator, 206-598-4295
Email: gailm9@uw.edu
Neurology
Physiatry
Neurogenetics
Pediatric Services Provided:Clinical Director: Seth Perlman, MD
Appointments: Kara Smith, BSN, 206-987-6678
Email: Kara.smith@seattlechildrens.org
Neurology
Genetic Counseling
Physical Therapy
Occupational Therapy
Physiatry
Genetic Counseling
Orthotist
Orthopedic Surgery
Social Work
Nutrition
Adult Services Provided:Swedish Neuroscience Institute (James Tower)
550 17th Ave, Suite #400
Seattle, WA 98122
Visit Clinic WebsiteClinical Director: Christyn Edmundson, MD
Appointments: Christian Houk, 206-320-3494
Email: christian.houk@swedish.org
Neurology
Genetic Counseling
Physical Therapy
Occupational Therapy
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Washington, DC
Adult Services Provided:Medstar Georgetown University
3800 Reservoir Rd NW
7th Floor, PHC Building
Washington, DC 20007
Visit Clinic WebsiteClinical Director: Nicholas Streicher, MD
Clinical Co-Director: Noushin Jazebi, MD
Appointments: 202-444-1774
Email: diamond.x.walton@medstar.net
Neurology
Physical Therapy
Occupational Therapy
Genetic Counselor
Speech
Pulmonology
Nutrition
Pediatric (to age 21) Services Provided:Neuroscience Clinic; Children’s National Hospital*
111 Michigan Ave NW
Washington, DC 20010
Visit Clinic WebsiteClinical Director: Diana Bharucha-Goebel, MD
Appointments: Kathleen Smart, 202-476-6193
Email: ksmart@childrensnational.org
Neurology
Nutrition
Occupational Therapy
Orthopedic Surgery
Physiatry
Physical Therapy
Social Work/Counseling
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International CMTA Centers of Excellence
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Australia
Pediatric Services Provided:Peripheral Neuropathy Management Clinic*
The Children’s Hospital at Westmead
Cnr Hawkesbury Rd and Hainsworth St
Westmead NSW 2145
Australia
Visit Clinic WebsiteClinical Director: Manoj Menezes, MD
Appointments: (02) 98451325
Email:daralyn.hodgson@health.nsw.gov.au
Neurology
Orthopedic Surgery
Physiatry
Podiatry
Physical Therapy
(Referral to the following in-hospital services can be arranged where necessary: Orthotist, Genetic Counselor, Psychiatrist, Psychologist, Social Worker, Nutritionist/Dietician)
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Belgium
Adult & Pediatric Services Provided:Neuromuscular Reference Centre
Department of Neurology, Antwerp University Hospital
Wilrijkstraat 10
B-2650 Edegem, Belgium
Visit Clinic WebsiteClinical Director: Prof. Dr. Peter De Jonghe
Appointments: +32 3 821 34 23
Email: Neuromusculaire@uza.be
Clinical Neurology and Neurophysiology
Muscle Histopathology
Molecular Genetic Diagnosis
*The clinic has a multidisciplinary team consisting of all relevant medical and para-medical disciplines.
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England
Adult Services Provided:University College London Hospitals*
MRC Centre for Neuromuscular Diseases
8-11 Queen Square
London, England WC1N 3BG
Visit Clinic WebsiteClinical Director: Mary M. Reilly, MD
Appointments: Mariola Skorupinska, (0044)2034488019
Email: mariola.skorupinska@uclh.nhs.uk
Neurology
Orthopedic Surgery
Physical Therapy
Occupational Therapy*
Orthotics/Prosthetics*
Social Work/Counseling*
*Available upon referralAdolescent and Adult Services Provided:Atkinson-Morley Neuromuscular Centre (Neurosciences, Atkinson Morley Wing)
St George’s University Hospitals NHS Foundation Trust
Blackshaw Road
London, UK SW17 0QT
Clinical Directors: Dr. Niranjanan Nirmalananthan and Dr. Emma Matthews
Email: nervemuscle@stgeorges.nhs.uk
Neurology
Genetic Counseling
Physical Therapy
Occupational Therapy
Orthopedic Surgery
Orthotics Team (QMH)
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Italy
Adult & Pediatric Services Provided:C. Besta Neurological Institute (Milan)*
Clinic of Peripheral and Central Degenerative Neuropathies Unit
Via Celoria, 11 -20133 Milan, Italy
Visit Clinic WebsiteClinical Director: Davide Pareyson. MD
Appointments: +39-02-999.599
Email: neuropatie.rare@istituto-besta.it
Neurology
Physical Therapy
(Referral to the following services can be arranged where necessary: Physiatrist, Orthopedic Surgeon, Orthotist, Genetic Counselor, Psychiatrist, Psychologist)
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Thailand
Adult and Pediatric Services Provided:Siriraj Hospital
2 Wangland Road, Siriraj
Bangkok Noi, Bangkok, 10700
Clinical Director: Oranee Sanmaneechai, MD
Appointments: +66-24192660
Email: neuromuscular.si@gmail.com
Neurology
Physiatry
Genetic Counseling
Physical Therapy
Occupational Therapy
Orthotist
Social Worker
Orthopedic Surgery
Pulmonology
Cardiology
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