Patricia is the Founder and Executive Director of
Beyond the Diagnosis, a registered nonprofit providing art and science to inspire research and innovation of treatments for people living with orphan and neglected diseases. Beyond the Diagnosis began working on a project to increase research and raise awareness of rare diseases within the medical community through art. Professional artists paint portraits of children living with a rare disease; the portraits then become part of a traveling exhibit for medical schools, research institutes and hospitals. Our Beyond the Diagnosis art exhibit was first unveiled at Brown University's Alpert Medical School for the entire month of February 2015 in honor of World Rare Disease Day. Demand for this unique exhibition has increased 500% in the past three years. The exhibit continues to grow and inspire both the medical community and researchers to increase e orts in rare disease research and treatments. This exhibit has also touched the hearts and minds of the general public. Since the debut, Beyond the Diagnosis has visited the NIH, Broad Institute, Hofstra Medical, Harvard Medical, the FDA and many more. The exhibit currently consists of 100 portraits representing children living with rare and undiagnosed diseases. With your patronage, Beyond the Diagnosis will continue to grow, increase rare disease education in medical schools, increase research at some of the world’s leading institutions, create new conversations about rare diseases and bring hope and joy to the rare disease community. Patricia, the mother of two children with Ehlers-Danlos Syndrome, began working in this space by creating a new business model of working by state. Her award winning work in state-level advocacy grew to national advocacy efforts. Today, Patricia proudly works to successfully use art as a powerful tool to create awareness and increase innovation into orphan and neglected diseases.
