The Hereditary Neuropathy Foundation (HNF) announces its national network designating medical Centers of Excellence (COE) for the hereditary neuropathy patient community. The designated COEs demonstrate strengths in providing excellence in clinical care and research and will collaborate with HNF to expand their role as CMT/IN patient community hubs for clinical care, community engagement, research, and training/education.
*Acceleron Pharma has initiated a Phase 2 clinical study of ACE-083, an investigational drug, in patients with Charcot-Marie-Tooth (CMT) disease. They are currently accepting patients at the centers below highlighted in RED. For other locations accepting patients click here.
California
Cedars-Sinai Medical Center
127 S. San Vicente Blvd.
Advanced Health Sciences Pavilion, A6600
Los Angeles, CA 90048
Contact:
Dana Fine
Phone: 310-423-8497
Email: [email protected]
Stanford Neuroscience Health Center Neuromuscular Clinic
213 Quarry Road, 1st Floor
Palo Alto, CA 94304
Contact:
Jennifer Fisher
Phone: 650-723-6469
Email: [email protected]
Illinois
Chicago, IL 60611
Contact:
Dr. Vamshi Rao
Phone: Call 1-800-KIDS-DOC for an appointment.
If there is already a diagnosis of CMT, call 312-227-4471
Michigan
University of Michigan
2205 Commonwealth Blvd
Ann Arbor MI 48105
Contact:
Keianna Banbury
Phone: 734-763-2554 for appointments
Email: [email protected]
Website: https://umichmda.wordpress.com/
New Jersey
Goryeb Children’s Hospital *Pediatric Center of Excellence
55 Madison Avenue
Morristown, NJ 07960
Contact
Jahannaz Dastgir
Phone: 973-971-5700
Email: [email protected]
Hackensack University Medical Center*
360 Essex Street
Hackensack, NJ 07601
Contact
Annerys Santos
Phone: 551-996-8100
Email:[email protected]
Connecticut
Hospital for Special Care
Charles H. Kaman Neuromuscular Center
2150 Corbin Avenue
New Britain, CT 06053
Contact:
Sharon McDermott
Phone: 860-612-6305
Fax: 860-612-6304
Kansas
University of Kansas Medical Center*
Landon Center on Aging
3599 Rainbow Boulevard
Mailstop 2012
Kansas City, KS 66160
Contact:
Nicole Jenci
Phone: 913-945-9934
E-Mail: njenci@kumc.edu
Minnesota
University of Minnesota Health
Neurology Clinic
14500 99th Avenue N
Maple Grove, MN 55369
For Research Studies:
Phone: 612-624-7745
E-Mail: [email protected]
For Clinic Appointments:
Phone: 763-898-1080
New York
Columbia University
Department of Neurology
710 West 168th Street
New York, NY 10032
Contact:
For clinical appointments
Phone: 212-305-0405
For research studies
Phone: 212-305-6035, ask for Allan Paras
Email: [email protected]
Florida
University of Florida (UF) Health
2000 SW Archer Road
Gainesville, FL 32610
Contact:
Nivedita Jerath MD, MS
Phone: 352-294-5000
E-Mail: [email protected]
University of Miami
Professional Arts Center (PAC)
1150 NW 14th Street, 6th Floor
Miami, FL 33136
Contact:
Meri Jaime (for appointments)
Phone: 305-243-7400
E-Mail: [email protected]
Massachusetts
Brigham and Women’s Hospital
Department of Neurology
75 Francis St, Tower 5th Floor
Boston, MA 02115
Contact:
Kristen Roe
Phone: 617-525-6763
E-Mail: [email protected]
Missouri
St. Louis University Medical Center
Department of Neurology
1438 South Grand Boulevard
St. Louis, MO 63104
Contact:
Susan Eller
Phone: 314-977-4867
E-Mail: [email protected]
MU Health Care:
Department of Neurology
1020 Hitt Street
Columbia, MO 65212
Contact:
Dr. Raghav Govindarajan
Phone: 573-882-1515
E-Mail: [email protected]
Washington
St. Luke’s Rehabilitation Institute
715 South Cowley Street, Suite 210
Spokane, WA 99202
Contact:
Ann Cooper
Phone: 509-939-8079
Email: [email protected]