Rare Disease Day is an annual, awareness-raising event co-ordinated by EURORDIS at the international level and National Alliances of Patient Organisations at the national level.
Rare Disease Day is the perfect occasion to inform or remind people that rare diseases need to be paid special attention to, because :
- Rare diseases are life-threatening or chronically debilitating diseases
- The rare disease patient is the orphan of health systems, often without diagnosis, without treatment, without research, therefore without reason to hope.
- The lack of specific health policies and the scarcity of expertise translate into delayed appropriate diagnosis and difficulty of access to care. The national healthcare services for diagnosis, treatment and care of rare disease patients differ significantly in terms of their availability and quality. European citizens have unequal access to healthcare services and to orphan drugs.
- Research on rare diseases is scarce