PATHWAYS CORP
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Mission Statement
Bringing the rare disease patient’s needs to the center of provider, institutional and industry healthcare treatment goals.
About This Cause
Pathways To Trust is a 501c3 that brings all rare disease stakeholders together to share perspectives and collaboratively create interactive educational programs and communities centered on patient-identified goals. We focus on addressing the unmet needs of the Sickle Cell Disease and Ehlers-Danlos Syndrome communities with disease-specific educational programs for healthcare providers, medical students and patients. Our current initiatives include: 1. Time to Listen to Sickle Cell Disease, featuring programs presenting clinical information including SCD pathophysiology, complications, and latest treatment guidelines, as well as the physical, emotional and social/behavioral challenges that affect the trajectory of the disease. We target a) Emergency Department healthcare providers, b) nurses c) medical students d) school nurses. 2. Time to Listen to Ehlers-Danlos Syndrome, featuring programs for medical students about the challenges of pediatric pain, chronic pain, and living with a rare disease that affects every aspect of your life but is often not recognized by healthcare providers. 3. Walk In My Shoes is a university grant-funded project we are doing in partnership with the University of Illinois Chicago to create video learning tools to help students in all areas of healthcare understand the challenges faced by SCD patients. 4. Patient Empowerment Programs to teach rare disease patients how to confidently advocate for themselves with their healthcare team in order to become true partners in their medical care.