Our own family members suffer from rare diseases. We created PatientJourney.Org to help better understand the process of rare disease diagnosis and provide information and insights to members of the rare disease community. The journey between symptom onset and diagnosis is relatively unique for each disease. But there are often common patterns in the diagnostic.
We believe that by documenting and analyzing these patterns within individual rare diseases, we can help find out where the key issues are in the process, and find ways to shorten the journey.