The National Organization for Rare Disorders (NORD) announced on April 19, 2016 that twenty organizations had received a grant to develop a Natural History Studies for their patients.
OMSLife will be working with NORD to develop a patient registry to enable researchers, clinicians, and caregivers to better understand OMS and track trends in the disease. For caregivers, this will be important in establishing an understanding trends for treatment protocols, therapies, schooling, behavior, and transition to adulthood. It will help caregivers prepare for better quality of life for their OMS warrior. Details on the grant can be found at http://rarediseases.org/nord-announces-20-rare-disease-patient-groups-se... .