Patricia Welton has two daughters with Ehlers-Danlos syndrome. Her daughters had the disease for years before properly being diagnosed. That delay in diagnosis as well as the concept that each rare disease patient is unique and has a story to tell was the inspiration for her non-profit organization Beyond the Diagnosis.
Beyond the Diagnosis is an art exhibit focused on people with rare conditions. The exhibit has been seen throughout the country, including the Mayo Clinic, Harvard Medical School, and the National Institutes of Health.
This fall, the exhibit will be at various disease specific conferences, including the 12th International SADS Foundation Conference and the New England Hemophilia Association Fall Fest.
For more information visit www.beyondthediagnosis.org/