PROS Foundation -Pathways for Rare and Orphan Solutions

Our Mission and Inspiration As a 501(c)(3) non-profit corporation, our mission is to help prepare patient advocacy groups for clinical trials. We are committed to connecting with rare disease focused patient advocacy groups to guide them towards readiness for natural history studies or the clinical trial phase. It’s our heart’s passion to help these groups achieve their vision. Why We Exist Diagnosis is very important to a patient and their families. While a diagnosis can provide some relief, it is very often, “just the beginning”. For individuals diagnosed with a rare disease, there are often no treatments. Patient organizations that strive to gather data over time and prior to any clinical trial process significantly increase the ability for a Pharmaceutical, Biotechnology or Academic organization to design a more successful drug development program. We believe that the patient advocacy group provides the data and should remain owners of the data. As patient advocacy groups have many goals to achieve, with gathering data and organizing a database, they are not necessarily equipped with resources, either personnel or financial.