MitoAction and The POLG Foundation POLG-Related Disorders. EL-PFDD Meeting

MitoAction and The POLG Foundation are proud to announce that they will co-host an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting focused on POLG-Related Disorders. The virtual meeting will be held on Tuesday, November 17, 2026, and is open to all members of the mitochondrial disease community, including patients, caregivers, clinicians, researchers, and industry partners.

This PFDD meeting is a critical opportunity to elevate the voice of those impacted by POLG, helping the U.S. Food and Drug Administration (FDA) and other key stakeholders understand the real-life burden of this complex and progressive group of mitochondrial disorders. Insights shared during the meeting will help guide future research, therapy development, and regulatory decisions. Together, MitoAction and The POLG Foundation are working to ensure the meeting reflects the full range of POLG experiences, from children with Alpers-Huttenlocher syndrome to adults living with ataxia and PEO.

Participants will be invited to share their experiences through live testimony, polling, and written comments. MitoAction encourages all individuals and families affected by POLG—and those who support them—to attend and be part of shaping the future of mitochondrial disease care and treatment.

There are three ways to participate in the meeting:
1) The “Pre-meeting POLG Survey” gathers vital data that will allow scientists and the community to better understand the impact of POLG – https://survey.alchemer.com/s3/8950869/POLG-PFDD-Patient-Caregiver-Survey
2) Share your story on MitoAction’s website – https://www.mitoaction.org/join-the-cause/patient-focused-drug-development-meetings/patient-focused-drug-development-meeting-on-polg/
3) Register to attend the meeting – https://mitoaction-org.zoom.us/webinar/register/WN_GX3iFfxESiqNMRzGcBQQ0A#/

Questions? Contact MitoAction at [email protected].