To raise awareness of rare diseases and support families facing the many hurdles of navigating complex, little-known conditions, we are happy to present our newest short documentary: “More than Rare: The Journey of George”.
This short film spotlights the real-life experience of George, a joyful young boy diagnosed with Mosaic Variegated Aneuploidy (MVA) Syndrome.
George was just two years old when his health began to deteriorate. After months of hospital visits, he was diagnosed with liver cancer, and soon after, MVA Syndrome, a condition so rare that the family is yet to meet another patient sharing their son’s condition.
In this documentary, George’s father, Jonathan Bracey, reflects on his journey becoming both a caregiver and advocate. He pushed for second opinions, coordinated across countries, and asked the difficult questions, all while navigating a world with little information and few established treatment paths.
In response to the lack of resources for MVA, Jonathan founded the MVA Society, the first organization dedicated to supporting families living with this ultra-rare genetic condition. The Society now works to build a global registry, connect families and researchers, and drive forward clinical understanding of MVA.
As part of its mission to amplify underrepresented voices in the rare disease community, Fondation Ipsen Studio produces documentaries that highlight the lived experiences of rare disease patients and their families.
More than Rare: The Journey of George is one of several films dedicated to raising awareness, fostering understanding, and supporting advocacy.
Read more
Read more
Read more
Read more