If you live in the UK and you or someone in your family has DRPLA, you can use the Ataxia UK Helpline services to access information, advice and support. The Helpline is a resource and support hub for people who are affected by ataxias. As well as providing support...
CureDRPLA awards DRPLA Centers of Excellence accreditations to those neurologists who have experience in DRPLA care and commit to supporting our work. In addition to providing expert clinical care and identifying the various needs of those diagnosed with DRPLA, this...
In the past, we have reported that the US is further ahead with individualized genetic therapies and N-of-1 trials for ultra rare conditions such as DRPLA because established systems and frameworks enable this work. It is encouraging to see other countries, such as...
Did you miss the meeting on November 12? We recorded the presentation so you can watch it at your own pace. The video is available on our YouTube channel. This talk includes updates on our organization, N-of-1 trials, DRPLA Natural History and Biomarkers Study,...
The most comprehensive description of symptoms and findings from clinical tests, brain scans, and blood tests from people living with DRPLA has been published by Dr Shi-Rui Gan and his collaborators based in China. They enrolled 116 people living with DRPLA across...