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...
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...
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...
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....
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...