The RARE Siblings Experience: Patient Advocacy Summit Session

September 22, 2022

The RARE Siblings Experience puts the focus on the siblings of individuals with rare disease at the Patient Advocacy Summit in San Diego, California September 12-14, 2022.

Abby Turnwald, Aprill Lane, and Rian Edwards joined Emily Holl, discuss how siblings of individuals with a rare disease handle their role in the family. Moderator Emily Holl directed the conversation, which ranged from learning about their sibling’s condition to being their own person and supporting their sibling’s needs.

Sometimes called glass children, the siblings of a person with a RARE disease have unique demands put on them. How can you best care for a sibling or be that sibling? How can they split their focus between having their own life apart from their sibling’s needs?

Moderator: Emily Holl, Director, Sibling Support Project
• Rian Edwards, RARE Sibling
• Aprill Lane, US Advocacy Lead, Rare Disease, UCB
• Abby Turnwald, Genetic Counseling Student

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