Virtual Nov 17 event provides rare mitochondrial disease patients and caregivers a platform to share experiences with FDA.
NOVI, MI, UNITED STATES, October 20, 2026 /EINPresswire.com/ — MitoAction and The POLG Foundation to Co-Host Externally-Led Patient-Focused Drug Development Meeting on POLG-Related Disorders
Virtual PFDD Meeting Scheduled for November 17, 2026
NOVI, Mich., Oct. 20, 2026 — 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. They are joined by advocacy partners United Mitochondrial Disease Foundation (UMDF) and International Mito Patients (IMP), among others, in bringing this meeting forward.
POLG-related disorders are a group of rare genetic mitochondrial conditions caused by changes in the POLG gene, which provides instructions for making polymerase gamma, the only enzyme that can copy and repair mitochondrial DNA. Because mitochondria power the body’s cells, these disorders most often affect high-energy organs such as the brain and muscles, and symptoms can overlap and vary widely. The POLG spectrum includes Alpers-Huttenlocher syndrome, ataxia neuropathy spectrum (ANS), childhood myocerebrohepatopathy spectrum (MCHS), myoclonic epilepsy myopathy sensory ataxia (MEMSA), progressive external ophthalmoplegia (PEO), and others. These conditions significantly affect daily functioning and quality of life, with no cure currently available. Treatment is limited to symptom management and supportive care.
“As a pediatric neurologist, I’ve seen what POLG takes from children and families, often faster than our medical tools can measure it,” said Dr. Brian Tseng, CEO of The POLG Foundation. “Lab values, medical records, published articles and scans tell only part of the story. On November 17, families will tell the rest, and that testimony will shape how future treatments are judged.”
To ensure the best possible virtual experience for participants, the meeting will be produced at Detroit Country Day School’s (DCDS) state-of-the-art film and virtual production studio. Participants will be invited to share their experiences through live testimony, polling, and written comments. Ahead of the meeting, patients and caregivers can also take a 30-minute, anonymous pre-meeting survey (open through October 31, 2026) and submit their personal stories, which will be compiled into the official Voice of the Patient report shared with the FDA.
“No one understands POLG better than the people living with it,” said Kira Mann, CEO of MitoAction. “We are honored to partner with The POLG Foundation, and we urge every patient, caregiver, and loved one to take the survey, share their story, and join us on November 17. Your voice can change what comes next.”
Event Details:
Title: Externally-Led Patient-Focused Drug Development Meeting on POLG-Related Disorders
Date: Tuesday, November 17, 2026
Time: 10:00 AM – 4:00 PM ET
Location: Virtual. Register at https://mitoaction-org.zoom.us/webinar/register/WN_GX3iFfxESiqNMRzGcBQQ0A
Pre-Meeting Survey (closes October 31, 2026): https://survey.alchemer.com/s3/8950869/POLG-PFDD-Patient-Caregiver-Survey
For updates and registration information, please visit www.mitoaction.org or contact info@mitoaction.org.
About MitoAction
MitoAction is a national nonprofit organization dedicated to improving the quality of life for children, adults, and families living with mitochondrial disease through support, education, advocacy, and the advancement of therapeutic development. For more information, visit www.mitoaction.org.
About The POLG Foundation
The mission of The POLG Foundation is to support and accelerate research to find effective treatments and a cure for POLG mitochondrial disorders. For more information, visit www.polgfoundation.org.
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Michael Green
MitoAction, Inc
michael@mitoaction.org
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