Dr Elisa Martelletti recently attended the Oxford-Harrington Rare Disease Centre Symposium, which brought together experts from academia, industry, healthcare, and patient advocacy to discuss advances in rare disease research and treatment development.Sessions...
Advancing research in rare conditions like DRPLA is only possible when people work together. The DRPLA Natural History and Biomarkers Study (NHBS) is a great example of how researchers, clinicians, families, and patient organizations across the world joined forces to...
Being recognized as a DRPLA Centre of Excellence is about much more than a title. In addition to providing expert clinical care and identifying the various needs of those diagnosed with DRPLA, the Centers must have an ongoing interest in research into DRPLA. Over the...
Junko Shiozawa, Advisory Board Member for CureDRPLA, has played an important role in bringing together Japanese people living with DRPLA and their families. Through her leadership within the DRPLA Family Network (DFN), she continues to strengthen the partnership...
We co-hosted a couple of webinars on DRPLA with the National Ataxia Foundation (NAF) to reach as many people as possible. We invited anyone with DRPLA, family members, caregivers and friends to join to learn more. If you were unable to attend the live sessions, you...