by Silvia Prades | May 31, 2023 | Announcements
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.
by Silvia Prades | Mar 22, 2023 | News Articles
If you ever asked yourself this, the map we have created will come in handy. We coloured in orange those countries in which at least one person with DRPLA has been identified – 35 countries in total! We have gathered this information from scientific articles and...
by Silvia Prades | Mar 8, 2023 | News Articles
On February 22nd, I organised a meet up for families affected by DRPLA who are based in Wales. I travelled to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at University College London on the DRPLA Natural History and Biomarkers Study. We met with...
by Silvia Prades | Feb 14, 2023 | Announcements
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...
by Silvia Prades | Feb 10, 2023 | Events
Silvia Prades is going to Cardiff with Dr Hector Garcia-Moreno and Ola Volhin, who work at UCL on the DRPLA Natural History and Biomarkers Study. It will be a great opportunity to meet us and also, to get to know other families that are affected by DRPLA.
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