Grieving Diagnosis, Lack of Diagnosis and Loss: 2023 RARE Advocacy Summit Session

October 20, 2023

As part of the Empowering the RARE Individual track from the 2023 RARE Advocacy Summit, this panel discusses Grieving Diagnosis, Lack of Diagnosis and Loss

When the life you’ve anticipated is forever changed by rare disease, there is often an overwhelming sense of loss. This session will discuss managing many forms of grief, learning to live well in your new reality and how to find organizations and resources that can help you cope.

* Daniel DeFabio
Director, Community Engagement, Global Genes

* Ronda Thorington, LPC
Clinician, Parent Coach

* Mindy Pace
Patient, Caregiver, Peer Support Leader, Give an Hour

* Kristin McKay
Executive Director, Project Alive

* Suzanne Edison, MA, MFA
Mental Health Coordinator, CURE JM Foundation

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