Married couple Sarah and Troy Tompkins are a formidable pair when it comes to dealing with her serious rare disease – whether at home, in the hospital, in the public eye, or on Capitol Hill. Sarah’s Ehlers-Danlos Syndrome is front and center in their lives each day and night, but the Tompkins adapt and press on with their lives, work, and advocacy. Sarah’s connective tissue disorder causes chronic pain and injury, requires infusions and surgeries, necessitates use of a wheelchair, and demands other adaptations. Living with her unseen and often misunderstood disorder, Sarah focuses her advocacy on awareness for all rare disease patients. Through her Ms. Wheelchair Pacific Coast USA 2021 role, she gives women with disabilities a voice.
Tim Vincent helps organizations increase their capacity to be more inclusive and reduce the negative impact...
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Stanley Crooke, MD, PhD, talks about his non-profit, which brings the benefits of modern biotechnology to patients with serious, ultra-rare disorders. His pioneering research has led to first-time tr
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