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Designing Resources for Patients and Families Living with Intestinal Failure/Transplantation
103.1 - Designing Resources for Patients and Families Living with Intestinal Failure/Transplantation
Presenter: Michele Pfab, Bethany Johnson, Elizabeth Garofalo, Christina Belza, , , Authors: Michele Pfab, Bethany Johnson, Elizabeth Garofalo, Christina Belza
Overview
Children and adults with intestinal failure can present with diverse challenges and rely on consistent and comprehensive education and resources to support their care. This webinar will review resources that have been recently developed to identify what currently exists, as well as a discussion on what the gaps are and how we as an intestinal failure community can continue to advocate for resource and education development for patients and families.
Learning Objectives
Discuss challenges that children and adults with IF face that can be addressed through resources and education.
Review education materials developed for child integration into school
Highlight the development of Transplant Unwrapped – a resource for pediatric and adult intestinal failure and transplant patients.
NP, GIFT, The Hospital for Sick Children (SickKids)
Elizabeth Garofalo, PHC-NP, is a Nurse Practitioner at the Hospital for Sick Children and has worked on the GIFT team in intestinal rehabilitaiton since 2018.
Board Member and Intestinal Failure Patient Transplant Unwrapped
Bethany is a self-described professional patient. She currently manages her complex medical team, integrating her home care and daily medical needs. As a patient advocate, she volunteers with advocacy groups to help bring awareness to legislators for patients living with rare disease. She also has served on research steering committees providing patient perspectives. Her full-time job is as an Architect and Program Manager with the Department of the Navy. She has been an integral part of award-winning design teams across the country and around the world. Bethany is also a Founding Board Member of the 501(c)3 Transplant Unwrapped where she helps bring the mission to life to ensure every patient, caregiver, and member of the intestinal disease community feels well-educated and supported throughout their journey with intestinal failure, intestinal rehabilitation, and intestinal and multivisceral transplantation. In her spare time she is an avid hiker, biker and loves to read.
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