OMSLIFE FOUNDATION INC
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Mission Statement
The mission of The OMSLife Foundation is to - Raise awareness of Opsoclonus Myoclonus Syndrome - Provide a support network for caregivers and patients - Fund research for a cure to OMS
About This Cause
The OMSLife Foundation provides specialized resources for patients afflicted with Opsoclonus Myoclonus Syndrome (OMS). We work with OMS patients worldwide to find specialists to treat their ultra-rare disease. Some of the key programs and projects we provide include: 1. OMS research projects - some recent projects include - OMS Sleep Study - Quality of Life study - Eye Movement Study - Funding for POOMAS registry - Inaugural findings of patients from the OMS registry - Funding open source access of the OMS Consensus Statement 2. OMS patient reported registry via a partnership with NORD 3. Co-hosting OMS Medical Workshop 4. Hosting OMS Caregiver Conferences 5. Funding Rare Awareness Radio podcast 6. Providing resource materials - Education guides - Awareness information - Treatment guidelines - Contact information for medical providers - Presentations from prior conferences - Information from poster sessions 7. Providing networking opportunities via various social media platforms 8. Assisting patients in finding appropriate medical resources to tend to their specific medical needs