Some key resource information for caregivers and patients include the following:
National Organization for Rare Disorders (NORD) – https://rarediseases.org/rare-diseases/opsoclonus-myoclonus-syndrome/
OMSLife wikibook – https://en.wikibooks.org/wiki/OMS_Manual
Dancing Eyes Support Trust (UK) – http://dancingeyes.org.uk/
NIH – https://rarediseases.info.nih.gov/diseases/10009/opsoclonus-myoclonus-syndrome