PROS Foundation -Pathways for Rare and Orphan Studies

About

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.

Keywords

pairing sponsors with trials, natural history studies, retrospective chart review, finding patients for sponsors, prospective study management, advocate rare disease legislation, develop & support registries, working with & for patient advocacy groups, pairing patients with registries

Amenities

No amenities listed yet

Upcoming Events

No upcoming events scheduled

Frequently Asked Questions

No reviews yet. Be the first to review!

Social Links

No social media links available

Photo Gallery

No photos available

Contact Information

Business Info

Location

Business Hours

Business hours not available