Patricia Weltin, patient advocate

Patricia Weltin is the CEO/Founder of Beyond the Diagnosis, a traveling art exhibit that unites art and science to inspire research and innovation of treatments for people living with rare diseases. Artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research institutes, hospitals, museums, and art galleries around the world. Patricia is the mother of two children living with Ehlers-Danlos Syndrome (EDS), a rarely diagnosed, multi-systemic connective tissue disorder. Her work as CEO of Beyond the Diagnosis led Patricia to make connections among many rare diseases, notably the prevalence of Tethered Spinal Cord (TSC) in the rare population. Patricia, a citizen scientist, was recently published in the American Journal of Medical Genetics.