Rareconnect will retire on 1st December 2023 and we won't be able to post on the DRPLA community anymore. You can continue getting updates on the following sites:DRPLA Facebook group - https://www.facebook.com/groups/144167217964CureDRPLA Facebook page...
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.
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...
You can find it here. Send it to friends, family, caregivers and medical professionals!
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.