Patient resources for GNE myopathy
Places to find practical help and support. Each organization sets its own services and eligibility.
Communities and additional support
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TREAT-NMD / GNE Myopathy Disease Monitoring Program
Condition-specific resource · Based in the United Kingdom
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Advancement of Research for Myopathies (ARM)
General support · Based in the United States
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Gli Equilibristi HIBM
General support · Based in Italy
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Hope for GNEM
General support · Based in the United States
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Solve GNE
General support · Based in the United States
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NDF HIBM / GNE Myopathy Patient Support Group (Facebook)
Condition-specific resource · Peer support
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World Without GNE Myopathy Facebook Page
Condition-specific resource · Peer support
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Myositis Community — Inspire
General support · Peer support
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NDF HUDDLEs — Virtual Peer Support Meetings
General support · Peer support
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NDF Public Facebook Page
General support · Peer support
Visit peer community
Further information
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GARD condition information
Condition-specific resource
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Orphanet condition information
Condition-specific resource
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