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If you or someone you care for has a rare disease you know the tremendous challenges that exist.

It can take up to 8 years to get an accurate diagnosis. Even then, finding the right treatment can be complicated and confusing. This long and difficult “journey” can have a significant impact on the lives of patients and their family members. At patientjourneys.org our mission is to shorten this journey.  We learn from the experiences of others to help those living with a rare disease get diagnosed more quickly and get the best treatment available. 

Please take our brief survey - a few minutes of your time may save someone years

Learn From The Experiences of Others Like You

Minutes of your time now may save others years on their rare disease journey.

Sharing your story is easy to do and only takes about 10 minutes.  Your information is aggregated with others who have the same condition and then shared back with you and our physician community.

Your individual information will always remain private.

Please take our brief survey - a few minutes of your time may save someone years

Learn From The Experiences of Others Like You

Rare diseases are - rare. Because of this doctors maybe less familiar with their symptoms, diagnostic patterns, and the most effective treatments.

Patientjourneys.org was created with this in mind.  We believe that by sharing all of our experiences we can help more patients get diagnosed more quickly and get the treatment they need.

Please take our brief survey - a few minutes of your time may save someone years

Learn From The Experiences of Others Like You

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