Patricia Weltin, patient advocate
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المحتوى المقدم من The Health Design Podcast and Moyez Jiwa. يتم تحميل جميع محتويات البودكاست بما في ذلك الحلقات والرسومات وأوصاف البودكاست وتقديمها مباشرة بواسطة The Health Design Podcast and Moyez Jiwa أو شريك منصة البودكاست الخاص بهم. إذا كنت تعتقد أن شخصًا ما يستخدم عملك المحمي بحقوق الطبع والنشر دون إذنك، فيمكنك اتباع العملية الموضحة هنا https://ar.player.fm/legal.
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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