"Turning our attention to the business model of non-profits around curing a specific condition — I distinguish this from basic research, as we are now standing on the shoulders of tremendous basic research — I believe non-profits need to invest more strategically, honing in on research that is intended to lead to commercial treatments. When the EB Research Partnership evaluates a project for funding, we try to understand how and when the project in question can be made into a commercial therapy. The operative words are “commercial therapy.” A viable treatment that no manufacturer will produce or that does not meet FDA risk-benefit calculations is not, in fact, viable. The key questions of what the product roadmap will look like, how much will it cost, and how will it fare in the regulatory process must be identified early on. I can’t stress this enough. Our goal is to treat and cure EB. That can only be accomplished if the academic research can be translated into products for patients suffering from EB." - urbansheep@gmail.com