KMT2B Dystonia Support Groups Worldwide Directory
IMPORTANT NOTE
Currently, there are no specific KMT2B dystonia support groups. However, all general dystonia support organizations welcome KMT2B patients and families. KMT2B is a recognized form of dystonia, and these organizations provide support for all types of dystonia including rare genetic forms like KMT2B.
UNITED STATES
Online Support
Dystonia Medical Research Foundation (DMRF)
- Type: National Organization, Online Forums
- Website: https://dystonia-foundation.org/
- Online Support: https://dystonia-foundation.org/living-dystonia/online/
- Support Groups: https://dystonia-foundation.org/living-dystonia/support-groups/
- Phone: Contact through website
- Email: Contact through website
- Focus: All types of dystonia including KMT2B
- Services: 24/7 online support, educational resources, research funding
Facebook Support
General Dystonia Facebook Groups (US-based)
- DMRF Social Media Communities: Available through DMRF website
- Search Terms: “Dystonia Support,” “Pediatric Dystonia,” “Rare Disease Support”
In-Person Support
Local DMRF Support Groups
- Website: https://dystonia-foundation.org/living-dystonia/support-groups/
- Coverage: Nationwide support groups
- Contact: Through DMRF website to find local groups
Family Support
Parents of Children with Dystonia
- Available through: DMRF support network
- Focus: Pediatric dystonia including KMT2B
CANADA
Online Support
Dystonia Medical Research Foundation Canada (DMRF Canada)
- Website: https://dystoniacanada.org/
- Online Support: https://dystoniacanada.org/online-support
- Phone: Contact through website
- Email: info@dystoniacanada.org
- Services: Online forums, educational resources
Facebook Support
Canadian Parents Facebook Group
- Group: Facebook Group for parents of children with dystonia in Canada
- Link: Available through DMRF Canada website
- Focus: Parents and families
In-Person Support
Provincial Support Groups
- Website: https://dystoniacanada.org/support/support-groups
- Coverage: Support groups across all provinces
- Contact: archanacastelino@dystoniacanada.org (National Director)
UNITED KINGDOM
Online Support
Dystonia UK
- Website: https://www.dystonia.org.uk/
- Support Groups: https://www.dystonia.org.uk/support-groups
- Phone: Contact through website
- Email: Contact through website
- Focus: All dystonia types including pediatric and rare forms
In-Person Support
Local Support Groups
- Website: https://www.dystonia.org.uk/your-local-support-group
- Coverage: Throughout UK
- Services: Physical and online support groups
Family Support
- Available through: Dystonia UK network
- Focus: Families and caregivers
EUROPE
Regional Coordination
Dystonia Europe
- Website: https://dystonia-europe.org/
- Members: https://dystonia-europe.org/about-us/members-organisations/
- Email: sec@dystonia-europe.org
- Coverage: 22 member organizations from 19 countries
- Services: Coordinates European dystonia support
GERMANY
Deutsche Dystonie Gesellschaft e.V.
- Organization: German Dystonia Society
- Contact: Through Dystonia Europe website
- Website: Listed in Dystonia Europe members
Selbsthilfeorganisation Dystonie-und-Du (DyD) e.V.
- Organization: German Self-Help Organization
- Contact: Through Dystonia Europe directory
FRANCE
AMADYS – Association des Malades Atteints de DYStonie
- Website: Contact through Dystonia Europe
- Focus: French dystonia patients and families
ITALY
ARD – Associazione Italiana per la Ricerca sulla Distonia
- Organization: Italian Dystonia Research Association
- Contact: Through Dystonia Europe network
NETHERLANDS
Dystonie Vereniging Nederland
- Organization: Dutch Dystonia Association
- Contact: Through Dystonia Europe
SWITZERLAND
Schweizerische Dystonie-Gesellschaft
- Organization: Swiss Dystonia Association
- Contact: Through Dystonia Europe network
BELGIUM
Belgische Vereniging voor Dystoniepatiënten V.Z.W.
- Organization: Belgian Dystonia Patient Association
- Contact: Through Dystonia Europe
AUSTRALIA & NEW ZEALAND
AUSTRALIA
Online Support
Dystonia Network of Australia Inc. (DNA)
- Website: https://dystonia.org.au/
- Support: https://dystonia.org.au/living-with-dystonia/emotional-mental-health/
- Services: Monthly Zoom chats for members, online resources
- Focus: All dystonia types including pediatric
Australian Dystonia Support Group (ADSG)
- Website: https://australiandystoniasupportgroup.wordpress.com/
- Facebook: https://www.facebook.com/AustralianDystoniaSupportGroup/
- Focus: National support and information
In-Person Support
State-Based Support Groups
- SA Dystonia Support Group: Through Hospital Research Foundation Group
- Contact: Through DNA website for current in-person options
Facebook Support
Australian Dystonia Support Group Facebook
- Facebook: https://www.facebook.com/AustralianDystoniaSupportGroup/
- Members: 2,800+ members
- Focus: Patients, families, and caregivers
NEW ZEALAND
Online Support
New Zealand Dystonia Patient Network Inc.
- Website: https://www.dystonia.org.nz/
- Established: 1992
- Focus: All forms of dystonia
- Contact: Through Your Way Kia Roha network
National Support
Contact Information:
- Website: https://www.yourwaykiaroha.nz/learning-information/online-information-hub/advice/national-support-organisations/
- Mission: Support dystonia patients with information, networking, and research facilitation
ASIA
INDIA
Research Centers with Patient Support
National Institute of Mental Health and Neurosciences (NIMHANS)
- Location: Bengaluru, Karnataka, India
- Department: Department of Neurology
- Research: Active KMT2B dystonia research
- Contact: Through hospital website
- Note: Major research center for KMT2B in India
CHINA
Research-Based Support
- Note: KMT2B research conducted at major Chinese medical centers
- Contact: Through published research papers and medical institutions
JAPAN
Research Centers
- Note: Active KMT2B dystonia research and treatment centers
- Contact: Through major medical universities and hospitals
INTERNATIONAL SUPPORT
Global Online Communities
Dystonia Coalition Patient Advocacy Groups
- Website: https://dc.rarediseasesnetwork.org/patient-advocacy-groups
- Members Include:
- BEAT Dystonia
- Dystonia Europe
- Dystonia Medical Research Foundation
- Dystonia Network of Australia
- New Zealand Dystonia Patient Network
- Tyler’s Hope
International Organizations
Dystonia International
- Website: Contact through Dystonia Coalition
- Focus: Global dystonia support and research
BEAT Dystonia
- Focus: Research funding and patient advocacy
- Coverage: International
- Operations: Zero overhead organization
FACEBOOK SUPPORT GROUPS
General Dystonia Facebook Groups (Accept KMT2B patients)
Search Terms for Finding Groups:
- “Dystonia Support Group”
- “Pediatric Dystonia Support”
- “Rare Disease Support”
- “Movement Disorders Support”
- “Childhood Dystonia Parents”
Country-Specific Facebook Groups:
- US: Search “Dystonia Support USA”
- Canada: “Canadian Dystonia Support”
- UK: “Dystonia UK Support”
- Australia: “Australian Dystonia Support Group” (verified)
Parent/Family-Specific Groups:
- Search Terms: “Parents of Children with Dystonia”
- Canada-Specific: Available through DMRF Canada website
- General: “Rare Disease Parents Support”
ONLINE FORUMS & INTERNET SUPPORT
24/7 Online Support
Available Through:
- DMRF Online Support: https://dystonia-foundation.org/living-dystonia/online/
- DMRF Canada Online: https://dystoniacanada.org/online-support
- Dystonia UK Online Communities
- Dystonia Europe Network
Medical Support Forums
Search Terms:
- “Dystonia patient forums”
- “Pediatric dystonia online support”
- “Rare disease support forums”
- “KMT2B dystonia discussion”
PEDIATRIC-SPECIFIC SUPPORT
Children’s Hospital Networks
Contact Major Pediatric Centers:
- Boston Children’s Hospital: Movement Disorders Program
- Children’s Hospital of Philadelphia: Movement Disorders Program
- Contact: Through hospital social work departments
Pediatric Dystonia Resources
DMRF Pediatric Support:
- Website: https://dystonia-foundation.org/what-is-dystonia/types-dystonia/pediatric-dystonia/
- Focus: Childhood dystonia including KMT2B
HOW TO ACCESS SUPPORT
Steps to Join Support Groups:
- Contact National Organizations First:
- DMRF (US): https://dystonia-foundation.org/
- DMRF Canada: https://dystoniacanada.org/
- Dystonia UK: https://www.dystonia.org.uk/
- DNA Australia: https://dystonia.org.au/
- Ask About KMT2B Specifically:
- All organizations support rare genetic dystonias
- Request connection to other KMT2B families if available
- Join Facebook Groups:
- Search for country-specific dystonia groups
- Join multiple groups for broader support
- Connect with Research Centers:
- Contact major pediatric movement disorder centers
- Ask about patient/family support programs
What to Expect:
- Warm Welcome: All dystonia organizations welcome rare genetic dystonia patients
- Shared Experiences: Many challenges are common across dystonia types
- Educational Resources: Information about treatments, research, and coping strategies
- Research Updates: Information about clinical trials and new treatments
Support Available 24/7:
- Online Forums: Through national dystonia organizations
- Facebook Groups: Active communities worldwide
- Educational Resources: Websites with comprehensive information
CONTACT STRATEGY
Recommended First Contacts:
- Your Country’s Main Dystonia Organization
- Dystonia Europe (if in Europe)
- Local Children’s Hospital Social Work Department
- Facebook Search for Local Groups
Questions to Ask:
- “Do you have experience with KMT2B dystonia?”
- “Can you connect me with other families with rare genetic dystonia?”
- “What resources do you have for pediatric dystonia?”
- “Are there online support groups I can join?”
Last Updated: August 2025 Note: While there are no KMT2B-specific support groups, the dystonia community is highly supportive and welcoming to all forms of dystonia, including rare genetic types like KMT2B. These organizations have experience with complex pediatric cases and can provide valuable support and resources.
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