Rare Disease Day 2020

To truly understand the patient perspective, it is important to understand every dimension of the patient’s life. Instead of a classical patient journey approach, we use diverse primary and secondary research sources to better illuminate how a person’s health situation, especially in rare diseases, interacts with the entirety of his/her life. These sources are then mapped into an interactive ecosystem, like the example shown below. Rare Disease Patient Ecosystems can help us reframe rare for the 300+ million patients worldwide who are living with a rare disease.