The PolG Foundation hosted a two day workshop for seventeen POLG cohort leaders from around the world prior to the EuroMit 2023 conference in Bologna. The aims of the workshop were to orchestrate and synchronize a global effort towards the initiation of a prospective natural history study, and to kick off a global joint and collaborative effort to tackle this devastating disease.
All the attendees, including three patient family advisors and representatives from two partner organizations (UMDF and Mito Foundation) were aligned with the mission of The PolG Foundation to support and accelerate research to find effective treatments and a cure for PolG mitochondrial disorders. The clinicians successfully focused their efforts in sharing experiences and data that will help improve the understanding of the condition. Most importantly, they agreed to work together going forward towards sharing data, including the design and implementation of a global prospective natural history study, which will become the cornerstone for the development of future therapies.
The positive, synergetic atmosphere of the workshop was enhanced by the fact that doctors, advisors and advocates from partner organizations were able to be together in person, some for the first time, after having worked together remotely.
The PolG Foundation is very grateful to all attendees for the dedication to each of their patients and to their willingness to commit to a common orchestrated global PolG effort. This challenging project requires important resources and The PolG Foundation is committed to coordinate and collect the required resources. If you would be interested in financially supporting our endeavours, please do contact us.