Jaime Prout

Background

About Jaime Prout

I am a PhD molecular geneticist and biotech scientist with over a decade of experience in rare disease research, gene therapy, and translational science. I also happen to be a patient living with hypermobile Ehlers-Danlos Syndrome (hEDS) and POTS. Despite building my career in rare disease and genetics, my own diagnostic journey was long, complicated, and deeply personal, an experience that highlighted firsthand the systemic gaps so many patients face. That experience has now led me to expand my work into a new area of focus: actively researching and writing a book that blends medical science, genetics, clinical practice, patient advocacy, and lived experience to explore why complex connective tissue disorders like hEDS remain so poorly recognized, and what can be done to improve diagnosis and care. My work is focused on:~ Raising awareness around the complexity of hEDS, dysautonomia, and related disorders.~ Highlighting gaps in medical education and diagnostic reasoning.~Advocating for stronger integration of genetics, connective tissue biology, and clinical training.~Providing scientifically grounded, patient-centered education for both patients and healthcare providers.~ Elevating patient voices to help others better self-advocate and find practical pathways to care. I’m looking to actively collaborate with the EDS community, clinicians, researchers, medical educators, and advocacy organizations to help drive change, both through this research and through broader efforts to improve rare disease care.