Charcot-Marie-Tooth Disease Resources & Family Support

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:

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:

📍 Regional CMTA Branches

🌊 West Coast

🌵 Southwest & Mountain West

🌴 Southeast

🏙️ Northeast

🌽 Midwest

🗻 Other States

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

🇩🇪 Germany

🇳🇱 Netherlands & 🇧🇪 Belgium

🇪🇸 Spain

Other European Countries:

🌏 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

🕊️ 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:

  1. Start with National Organizations for general CMT information and resources
  2. Find your Regional Branch using the geographic sections (West Coast, Southeast, etc.)
  3. Contact Medical Centers for specialized care and diagnosis
  4. Join Online Communities for immediate peer support

If you’re outside the United States:

  1. Check the International section for your country or region
  2. Contact ECMTF if you’re in Europe for coordination and referrals
  3. Join Global Virtual Communities for worldwide support
  4. Connect with nearest Center of Excellence for medical care

📞 Contact Methods Priority

  1. Phone numbers – For immediate assistance and personal support
  2. Email addresses – For detailed questions and formal requests
  3. Website contact forms – For general inquiries and information requests
  4. 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

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