Thank you for taking the time to share your experiences. Your voice is at the heart of this effort, and your responses will help deepen our understanding of the experiences, challenges, priorities, and unmet needs of individuals and families affected by POLG.

Your responses will contribute to a broader effort to ensure the realities of living with POLG are seen, heard, and understood. Relevant findings will help inform the POLG EL-PFDD meeting and Voice of the Patient report, while the broader survey findings will also support ongoing patient advocacy, research, and engagement with regulators, researchers, clinicians, and therapy developers. MitoAction also plans to publish findings from this survey in peer-reviewed scientific journals to help expand the body of knowledge about POLG-related disorders.

We are deeply grateful for your honesty, your time, and your partnership in helping elevate the voices of the POLG community and build a stronger understanding of what matters most to patients and families.

POLG PFDD Patient & Caregiver Survey