About Us
Patient Journeys was created by parents with children that have rare diseases.
If you are one of the many people living with a rare disease you probably know the challenges that exist with getting an accurate diagnosis and then getting the right treatment. Patientjourneys.org was created to help rare disease patients and their caregivers share information with each other. Together we can help the rare disease community get diagnosed more quickly, and get access to the most effective treatments available.