Sanath Kumar Ramesh – Rare Dad, Founder & CEO of Open Treatments, and Podcaster
The quest for treatments for rare diseases is challenging under the best circumstances. For ultra-rare diseases like Raghav’s, the system is just not built to find and provide treatments for nine patients. There is no viable business model. There is no regulatory pathway for approval when it is impossible to run clinical studies that can show statistical significance. If there is no approval, then insurance companies and even governmental payers like Medicaid are not going to pay the bill. Even if one could find a way to pay, how do you produce the medicines that emerge in such small amounts.
This is the world that Sanath has been wrestling with since Raghav was born. Now he is doing something about it. He and his team have launched Open Treatments, an organization with a platform to make research and the R&D process accessible to families fighting these ultra-rare conditions. The idea is to decentralize the research enterprise to individual diseases by pooling and sharing the tools, skills, processes, and knowledge about finding promising treatments. The vision is to find the treatments they need now and enable the hand-off of these treatments to commercial, governmental, and philanthropic entities that can ensure patients around the world have access to the therapies for years to come.
Please support Raising Rare and the search for a treatment for Raghav by donating to Cure GPX4