In April 2019, FDA held a public meeting to obtain patient and caregiver perspectives on the common issues and symptoms between rare diseases with the goal of synergizing and advancing medical treatment development. For the first time, the FDA is recognizing that the patient burden of disease is of as much importance to the development and treatment of Rare Disease as diagnostic markers.
It’s now being called “Natural History”. Earlier this year, Ben’s Friends participated in one of the first Natural History Studies based on “anecdotal data” gained through social data analysis & participant-contributed real-world data. What was discovered, although all of us who have Rare Disease and work with Rare Disease Patients already know it, was that what patients say to each other and what they say to medical professionals is not the same thing. The results of looking at what patients were saying to each other, what mattered to them, and what was really important to them has since lead to an entirely new decision/treatment matrix developed by a major Medical Center.
This September we have entered into a partnership with an organization that has a platform that can evaluate and quantify the natural history of our 75,000 community members as well as our 140,000 Facebook followers into real-world data to assist ongoing research and treatment of multiple rare diseases and co-conditions.
Every day, Ben’s Friends affects the lives of our patients, but with this partnership, we will have a profound effect on the lives of rare disease patients the world over by making essential connections: scientists, doctors, therapists, research organizations, patients, and caregivers can connect in real-time to facilitate research.