The theme of this years World Rare Disease Day is LIVING WITH A RARE DISEASE
Rare Diseases have enormous repercussions for the whole family. Living with a rare disease becomes a daily learning experience for patients and families. Though they have different names and different symptoms, rare diseases impact the daily lives of patients and families in similar ways. How to find a diagnosis, how to access treatments, how to find appropriate expertise, how to work with a team of caregivers, how to operate special equipment, how to administer treatments, how to identify and access social services, how to manage the economic burden of living with a rare disease and how to ensure the well-being of the entire family and balance priorities...just to name a few.