Since OMS is such a rare disease, it is easy to feel as though no one understands its complexities. The OMSLife Foundation has focused a great deal of time and effort to carefully craft avenues for OMS patients and caregivers to connect. Just a few short years ago, it was common to not know others battling this disease. With the introduction of our website and social media, we now have over 900 patients being connected across 54 countries. We have active Facebook forums in English and Spanish as well as a forum strictly for teens and young adults. In addition to the social media networking, we have introduced OMS Caregiver Conferences. Since 2014, we have hosted regional conferences across the country. This enables those impacted to meet with doctors and each other. As one caregiver put it, “We felt as though we had been battling this disease alone for so many years. But finally, after seven years, my son has had the opportunity to meet other OMS warriors”. We certainly feel that there is strength in numbers, and by knowing many other patients and caregivers, there are opportunities to compare and contrast approaches and best practices to treatments, therapies, schooling, behavior, relapses, insurance, and so many other things
