by Silvia Prades | Feb 28, 2024 | News Articles
Rare Disease Day is a global movement to raise awareness about rare diseases and the challenges faced by those living with them. This day serves as a powerful reminder of the extraordinary resilience and spirit of the individuals worldwide living with a rare disease,...
by Silvia Prades | Feb 22, 2024 | News Articles
In a study led by neurologist Silvia Grimaldi based in Trapani (Italy) and other professionals they reconstructed the largest family tree of DRPLA-affected individuals. Grimaldi and her collaborators investigated 6 apparently unrelated families with DRPLA, totaling 51...
by Silvia Prades | Feb 12, 2024 | Announcements
Take a few minutes to read this announcement about an upcoming n-of-1 clinical trial for an individual with DRPLA based in the US.
by Silvia Prades | Jan 23, 2024 | News Articles
Rare Epilepsy Network (REN) was founded in 2013 and it welcomes epilepsy organizations to come together and collaboratively improve outcomes of rare epilepsy patients and families by fostering patient-focused research and advocacy. Over the years, REN has grown into a...
by Silvia Prades | Jan 15, 2024 | News Articles
Every year, we like to provide an update on our projects, offering you insights into what we are working on and what is on the horizon. On November 14th, we hosted an online event for individuals with DRPLA and their family members in which Dr. Silvia Prades gave an...
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