Rare Disease Day is an annual observance day to raise awareness for the 300 million people worldwide living with a rare disease.
What are the universal challenges faced by those living with a rare disease?
- The lack of scientific knowledge and quality information on the disease often results in a delay in diagnosis.
- The need for appropriate quality health care engenders inequalities and difficulties in access to treatment and care. This often results in heavy social and financial burdens on patients.
- Owing to the broad diversity of disorders and relatively common symptoms which can hide underlying rare diseases, initial misdiagnosis is common. In addition, symptoms differ not only from disease to disease, but also from patient to patient suffering from the same disease.
- Research needs to be international to ensure that experts, researchers and clinicians are connected.
