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.
by Silvia Prades | Feb 1, 2023 | News Articles
We interviewed Dr Hector Garcia-Moreno and Ola Volhin about the DRPLA Natural History and Biomarkers Study, watch the full interview here. This is a global study with sites in London, New York and North Carolina, all of which are currently recruiting participants. The...
by Silvia Prades | Jan 18, 2023 | News Articles
The World Health Organisation has published a technical brief about epilepsy with key information and recommendations for decision-makers to strengthen the services for people with epilepsy. They aim to raise the profile of epilepsy prevention, treatment and care....
by Silvia Prades | Dec 19, 2022 | News Articles
To better understand upper limb function in a way that is meaningful to people with DRPLA, researchers included a novel approach to the DRPLA Natural History and Biomarkers Study. Dr Louise Corben from Murdoch Children’s Research Institute (Australia) and her team...
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