United States Charcot-Marie-Tooth Organizations
🏛️ National Organizations
Charcot-Marie-Tooth Association (CMTA)
The largest national CMT organization – Supporting drug development, improving quality of life, and finding a cure.
- Phone: (800) 606-2682
- Email: info@cmtausa.org
- Address: P.O. Box 105, Glenolden, PA 19036
CMT Research Foundation (CMTRF)
Patient-led research foundation – 100% focused on delivering treatments and cures, working directly with pharmaceutical and biotech communities.
- Contact: Through website form
Hereditary Neuropathy Foundation (HNF)
Research and patient support – Increasing awareness, supporting patients and families, and funding research for treatments and cures.
- Phone: (212) 860-5405
- Email: info@hnf-cure.org
- Address: 1641 3rd Avenue #28K, New York, NY 10128
🏥 Major Medical Centers & Centers of Excellence
Nationwide Children’s Hospital
CMT Center of Excellence – Nationally recognized for comprehensive diagnostic evaluation and treatment.
University of Miami Miller School
CMT Research Center – Leading research center identifying disease genes and developing therapeutic approaches.
Other Leading Centers:
- Hackensack University Medical Center, NJ – Dr. Florian P. Thomas | Phone: (551) 996-8100
- Lurie Children’s Hospital of Chicago – Pediatric Center | Phone: 1-800-KIDS-DOC
- AdventHealth Orlando, FL – Phone: (407) 303-6729
- Brigham and Women’s Hospital, Boston – Phone: (617) 525-6763
- Saint Louis University, MO – Phone: (314) 977-6177
- Austin Neuromuscular Center, TX – Phone: (512) 920-0140
View complete Centers of Excellence list
🤝 Online Support Communities
CMTA Emotional Support Group
Moderated online forum – Discussing emotional challenges, led by licensed psychotherapist David Tannenbaum.
HNF CMT Support Community (Inspire)
Large online community – Over 9,300 patient and caregiver members with 100,000+ posts.
Facebook Support Groups:
- CMTA Discussion Group – Worldwide community
- CMTActive – Movement and exercise focused
- CMTA Youth Group – Ages 13-21
- Parents of Children with CMT – Parent support
📍 Regional CMTA Branches
🌊 West Coast
- Los Angeles, CA – Marina del Rey meetings
- San Francisco Bay Area, CA – Peninsula region
- San Diego, CA – Facebook group
- Seattle, WA – Pacific Northwest
- Mission Viejo, CA – Contact: (800) 606-2682
🌵 Southwest & Mountain West
- Austin, TX – Austin History Center meetings
- Grapevine, TX – North Dallas area
- Houston, TX – In-person meetings
- Denver, CO – Mile High region
- Albuquerque, NM – Southwest meetings
🌴 Southeast
- Columbia, SC – Volunteer-led education group
- Atlanta, GA – Metro Atlanta area
- Jacksonville, FL – Mayo Clinic meetings
- Orlando, FL – Central Florida
- Miami, FL – Virtual meetings
- Charlotte, NC – Carolinas region
🏙️ Northeast
- Boston, MA – Mass General Hospital
- Washington, DC Metro – MD, VA, DC region
- Long Island, NY – Hauppauge meetings
- Philadelphia Region, PA – Multiple county branches
- Buffalo, NY – Western NY
- Manchester, CT – Connecticut
🌽 Midwest
- Columbus, OH – Central Ohio
- Cincinnati, OH – Southwest Ohio
- Cleveland, OH – Northeast Ohio
- Chicago, IL – Greater Chicagoland
- Minneapolis, MN – Twin Cities
- Kansas City, KS – Metro area
🗻 Other States
- Honolulu, HI – Pacific islands
- Little Rock, AR – Arkansas | Contact: (800) 606-2682
- Louisville, KY – Kentucky | Contact: (800) 606-2682
International Charcot-Marie-Tooth Organizations
🌍 International Coordinating Bodies
European Charcot-Marie-Tooth Federation (ECMTF)
European umbrella organization – Uniting CMT advocacy groups across Europe for research, awareness, and patient support. Founded 2016, registered in Belgium.
- Address: Fondation Universitaire, 11 Rue D’Egmont, B-1000 Brussels, Belgium
🇪🇺 Europe
🇬🇧 United Kingdom
Charcot-Marie-Tooth UK (CMTUK) – UK’s only national CMT charity supporting 1,300+ members through helplines, support groups, and educational programs.
🇫🇷 France
CMT France (Association Française CMT) – Founded 1990, serves 2,000+ members across France with 17 regional delegates. Member of EURORDIS.
🇮🇹 Italy
- ACMT-Rete – Italian patient advocacy group, ECMTF founding member
- Progetto Mitofusina 2 – CMT research and patient support
🇩🇪 Germany
- DGM (Deutsche Gesellschaft für Muskelkranke) – Muscular disease association with CMT subgroup
- CMT NET Germany – German CMT network
🇳🇱 Netherlands & 🇧🇪 Belgium
- Spierziekten Nederland – Dutch muscle disease organization, ECMTF founding member
- Spierziekten Vlaanderen – Flemish muscle disease organization
🇪🇸 Spain
- Asociación CMT España – Spanish CMT association
- El Motor de tus Pasos – Spanish support organization
Other European Countries:
- 🇦🇹 Austria: CMT Austria
- 🇨🇿 Czech Republic: Společnost C-M-T
- 🇷🇴 Romania: Asociatia CMT Romania & Neuro Move CMT
- 🇭🇺 Hungary: WonderFlora & CMT Alapítvány
🌏 Asia-Pacific
🇦🇺 Australia
CMT Australia – National organization since 1988, supporting patients through conferences, telehealth nursing, and youth programs.
- Phone: (02) 9767-5105
- Address: PO BOX 493, Engadine NSW 2233
🇨🇳 China
CMT China – Chinese CMT patient organization
🌎 Americas (International)
🇨🇦 Canada
- HNF Canada – Vancouver-based registered charity founded by Clarke McKeen
- CMT Canada Facebook Group – Led by Order of Canada member Linda Crabtree
- Calgary Neuropathy Association – Regional Alberta support
🕊️ Middle East
🇮🇱 Israel
CMT Israel – Israeli CMT support organization
💻 Global Virtual Communities
Inspire CMT Community
Largest global online community – 10,000+ international members providing peer support and real-world data for research.
CMTA International Social Media
- Asociación de Charcot-Marie-Tooth para Español – Spanish-speaking global community
- CMTA Discussion Group – English-speaking international community
Emergency Contacts
🚨 Immediate CMT Support
- CMTA Helpline: (800) 606-2682
- HNF Support: (212) 860-5405
🩺 Medical Emergency Resources
- Neurotoxic Medication List: Available at cmtausa.org
- CMT Medical Alert Information: Contact your local branch or CMTA
📧 Quick Contact
- New Branch Requests: laurel@cmtausa.org
- General CMTA Info: info@cmtausa.org
- HNF Programs: info@hnf-cure.org
- International Coordination: Contact ECMTF through website
How to Use This Directory
🎯 Finding the Right Organization
If you’re in the United States:
- Start with National Organizations for general CMT information and resources
- Find your Regional Branch using the geographic sections (West Coast, Southeast, etc.)
- Contact Medical Centers for specialized care and diagnosis
- Join Online Communities for immediate peer support
If you’re outside the United States:
- Check the International section for your country or region
- Contact ECMTF if you’re in Europe for coordination and referrals
- Join Global Virtual Communities for worldwide support
- Connect with nearest Center of Excellence for medical care
📞 Contact Methods Priority
- Phone numbers – For immediate assistance and personal support
- Email addresses – For detailed questions and formal requests
- Website contact forms – For general inquiries and information requests
- Social media groups – For peer support and community connection
🔍 Using the Search Features
- Ctrl+F (PC) or Cmd+F (Mac) to search for specific locations, conditions, or services
- Table of Contents links for quick navigation to relevant sections
- Geographic organization to find resources near you
💡 Pro Tips
For New Patients:
- Start with CMTA or HNF for comprehensive disease information
- Find your nearest Center of Excellence for proper diagnosis
- Join online support communities before your first appointment
For Families:
- Look for pediatric specialists if children are affected
- Connect with parent support groups on Facebook
- Ask about genetic counseling services at medical centers
For Healthcare Providers:
- Use Centers of Excellence for specialist referrals
- Access professional resources through CMTA and HNF websites
- Connect with research networks for clinical trials
For Researchers:
- Contact INC (Inherited Neuropathy Consortium) for collaboration
- Reach out to CMTA STAR program for funding opportunities
- Connect with international networks through ECMTF
🔄 Keeping Information Current
- Bookmark this directory for future reference
- Check organization websites for latest meeting times and locations
- Follow social media accounts for real-time updates and news
- Contact organizations directly to verify information before traveling
🌐 Language and Accessibility
- Spanish speakers: Look for “Español” communities and CMT organizations in Spain
- Other languages: Many European organizations offer multilingual support
- Accessibility needs: Most organizations can accommodate special needs – contact them directly
Related Subjects
Neuromuscular Disorders
Rare Disorders
Resources in your state