Hear from a person living with a rare disease about his/her diagnosis journey: what led to the diagnosis, how it happened, and how long it took. This episode also focuses on the emotional burden that occurs and the effect is has on the entire family.
Episode 2Disease Management
Listen to a rare diseases medical expert and a person living with a rare disease discuss key things to consider and questions to ask regarding disease management and treatment initiation.
Episode 3Life & Relationships
This episode details the importance of family members and their input and experience with getting support for themselves.
Episode 4What lies ahead
This episode will focus on a patient's goals and aspirations about the future of living with a rare disease.