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/

NORD Launches New Program Aimed at Providing Caregivers with Relief

Rare Awareness Radio – This podcast shares stories about OMAS and other diseases – https://rareawarenessradio.org

The OMAS Patient Reported Registry – This site is a registry providing surveys to collect patient data for research projects – https://OMS.iamrare.org

 

CONNECT ON SOCIAL MEDIA AT:

Facebook group for caregivers and patients (CLOSED Private group) – https://www.facebook.com/groups/omslife

Facebook Information Page for the public – https://www.facebook.com/OMSLifeInformation

Facebook group for Spanish caregivers and patients (CLOSED Private group) – https://www.facebook.com/groups/espanolomslife

Facebook group for UK and European caregivers and patents – https://www.facebook.com/groups/48271703613

Instagram – https://Instagram.com/omslifeawareness

Linkedin – https://linkedin.com/company/omslife-foundation-inc