In a study led by neurologist Silvia Grimaldi based in Trapani (Italy) and other professionals they reconstructed the largest family tree of DRPLA-affected individuals. Grimaldi and her collaborators investigated 6 apparently unrelated families with DRPLA, totaling 51...
Rare Epilepsy Network (REN) was founded in 2013 and it welcomes epilepsy organizations to come together and collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy. Over the years, REN has grown into a...
Every year, we like to provide an update on our projects, offering you insights into what we are working on and what is on the horizon. On November 14th, we hosted an online event for individuals with DRPLA and their family members in which Dr. Silvia Prades gave an...
DRPLA is a complex and heterogeneous condition that impacts many aspects of everyday life, thus individuals affected and their families require access to specialized care to better understand it and find the best way to manage it while a treatment becomes available....
Junko Shiozawa, our Advisory Board Member, has been on a remarkable journey of advocacy and awareness since her daughter was diagnosed with DRPLA 15 years ago. Her daughter currently faces significant health challenges, being bedridden with a gastric tube and a...