Patricia Weltin, patient advocate
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Manage episode 364279980 series 2922340
İçerik The Health Design Podcast and Moyez Jiwa tarafından sağlanmıştır. Bölümler, grafikler ve podcast açıklamaları dahil tüm podcast içeriği doğrudan The Health Design Podcast and Moyez Jiwa veya podcast platform ortağı tarafından yüklenir ve sağlanır. Birinin telif hakkıyla korunan çalışmanızı izniniz olmadan kullandığını düşünüyorsanız burada https://tr.player.fm/legal özetlenen süreci takip edebilirsiniz.
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.
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