Videos

Grandparents as Caregivers: Patient Advocacy Summit Session

September 22, 2022

Grandparents as Caregivers was part of the Caregivers Track at the Patient Advocacy Summit in San Diego, California September 12-14, 2022.

Mariana Parks and Darlene Shelton joined Effie Parks, to talk about the role that grandparents can play in helping to care for children living with a rare disease. Moderator Effie Parks led the discussion, including talking about how grandparents can be part of the care system, while balancing their own healthcare needs.

A look at the unique caregiving demands on grandparents of RARE children, including best practices, pitfalls to avoid, and communicating the hand off to parents.

Moderator: Effie Parks, Community Engagement Coordinator, Global Genes
Panelists:
• Mariana Parks, Grandparent Caregiver
• Darlene Shelton, President and Founder, Danny’s Dose Alliance

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