UMDF Statement on Charlie Gard

Our hearts go out to the Gard family in the U.K. They are in a position that no parent should ever have to experience and our thoughts are with them. Clinicians and researchers around the globe are tirelessly working to find faster diagnosis, effective treatments and ultimately a cure for this debilitating and often fatal disease. Last week, the world’s top clinicians and scientists gathered at the United Mitochondrial Disease Symposium in Washington DC to update patients and families on progress being made towards our roadmap to a cure. We have a long way to travel and the future ahead is promising but it cannot come fast enough to help Charlie and the hundreds of thousands of children and adults who courageously battle mitochondrial disease every day.

The recent events impacting baby Charlie Gard intensifies and justifies the need for increased support of research into the many aspects of mitochondrial disease.  Mitochondrial function cross-pollinates many other disease states and organ systems and may unlock pathways to safe and effective treatments and cures to many other rare and common diseases.  We support and congratulate President Trump and Pope Francis for expressing their support of Charlie Gard and his parent’s efforts and desire to travel to the United States for possible lifesaving medical treatment.

The United Mitochondrial Disease foundation (UMDF) is the largest patient foundation in the world focused on supporting affected families and research for mitochondrial diseases.  The recent episode of events involving little Charlie Gard epitomizes the need for enhanced coordination and communication of medical information and treatments for those suffering from mitochondrial disease.

For more information on mitochondrial disease see