Today, February 28th 2019, marks the 12th international edition of Rare Disease Day.
Rare Disease Day is an opportunity to be a part of a global call on policy makers, health care professionals, and care services to better coordinate all aspects of care for people living with a rare disease (http://www.rarediseaseday.org).
Epidermolysis Bullosa (EB) is certainly a rare Disease. In Canada approximately 5,000 people have the skin disease EB (http://www.debracanada.org).
MiaThrives is a charitable organization promoting awareness about EB and supporting families affected by EB. In honour of Rare Disease Day MiaThrives hosted a winter event on the slopes of Snow Valley Ski Resort in Ontario’s cottage country this past Saturday February 23rd, 2019. Over 125 people participated in our Snow Day by skiing, tubing, snow shoeing and enjoying lunch fireside in a cozy chalet. Learn more about Rare Disease Day HERE & Please enjoy our video.