The EveryLife Foundation is a fantastic non-profit organization that supports rare disease patients in self-advocacy and lobbies to advance policies that bring about better research for rare diseases by expediting drug-to-market approvals and securing funding for such research. The foundation was started by Dr. Emil Kakis, a geneticist who advocated for his patient Ryan. Ryan…

Cortney Gensemer, PhD is a research scientist with a specific focus on the genetic and molecular mechanisms of Hypermobile Ehlers-Danlos Syndrome (hEDS) and its related conditions. She recognizes that hEDS appears to have an immune system component, and she has published several research papers exploring that hypothesis. Her work with The Norris Lab has contributed…