Patient resources for Steinert myotonic dystrophy
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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Euro-DyMA (Federation of European Myotonic Dystrophy Associations)
Condition-specific resource · Based in France
Visit organization -
AFM-Téléthon
General support · Based in France
Visit organization -
Cure DM
General support · Based in the United Kingdom
Visit organization -
Inspire — Muscular Dystrophy Community (DM1 thread)
Condition-specific resource · Peer support
Visit peer community -
myMDteam — Muscular Dystrophy Social Network
Condition-specific resource · Peer support
Visit peer community -
The Mighty — Myotonic Muscular Dystrophy Community
Condition-specific resource · Peer support
Visit peer community -
MDF Facebook Community Groups (DM1, DM2, JOA, Caregivers)
General support · Peer support
Visit peer community
Further information
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GARD condition information
Condition-specific resource
Read condition information -
Orphanet condition information
Condition-specific resource
Read condition information
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