Managing Mental Health, Ambiguous Grief, and the Impacts of Diagnosis and Disease Progression

From the 2021 Global Genes RARE Patient Advocacy Summit

As we navigate through our rare life, mental health and the emotional wellbeing of the patient and family is often overlooked, while physical health is prioritized. Whether you are a patient, parent, partner or sibling, the emotional and psychological trauma associated with rare diseases must be addressed. Parents and experts will share their perspectives on opportunities to expand this conversation in the rare disease community and break down barriers to accessible care and resources.

• Understanding the impacts of diagnosis and continued disease progression on mental health and emotional wellbeing for patients, parents, and caregivers
• Redefining yourself and building a network of resources and support to managing ongoing shifts
• Understanding the impacts of ambiguous grief, anticipatory loss, and changes in baseline