We’re Jack, Jeff and Dave — three dads who’ve walked the rare disease road with our own kids and family. We know the sleepless nights, the endless research, and the feeling that no one else quite understands. That’s why we started PatientJourneys.org — a place built by parents who’ve been there, for families who just want honest help and hope.
If you are one of the many people living with a rare condition you probably know the challenges with getting an accurate diagnosis and the right treatment. Patientjourneys.org was created to help better understand the process of rare disease diagnosis and to provide information and insights to members of the rare disease community.