Junko Shiozawa, Advisory Board Member, visited Europe and met with Julie Greenfield, Head of Research at Ataxia UK, to talk about ataxia research and the latest news in DRPLA.
Are your healthcare professionals knowledgeable about DRPLA?
From your experiences when dealing with healthcare professionals: What information would be helpful to have out there?Are your healthcare providers familiar with CureDRPLA?Would it be helpful to have a flyer about DRPLA in lay language?What information would be...
Share our new CureDRPLA pamphlet to raise awareness of DRPLA
You can find it here. Send it to friends, family, caregivers and medical professionals!
We are presenting a poster at ICAR about the CureDRPLA Global Patient Registry
Silvia will present a poster with data collected from the 33 participants. It will address questions like ‘What is the average age of onset?’ ‘What are the most bothersome symptoms?’ ‘How many patients experience epilepsy?’ and many more.
DRPLA Natural History and Biomarkers Study: the London site is now recruiting!
Prof. Paola Giunti at University College London is recruiting participants for this study.