Quality of Life Measures
Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures. ...
SCN2A Insights
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About
Listen to SCN2A Insights to keep up to date with the latest research in SCN2A, genetic epilepsy and rare genetic disorders. Hosted by Ms Kris Pierce, RARE Global Advocacy Leadership Council member, and Dr David Cunnington, parents of Will, who has SCN2A.
Ciitizen
Ciitizen's mission is to empower seven billion citizens across the planet with all of their health data. When you control your data, you have more opt...
Sleep in Autism
Children, adolescents and adults with autism can have significant sleep problems. Trouble getting to sleep, waking at night and early morning waking a...
Simons Searchlight
Simons Searchlight is an initiative of the Simons Foundation Autism Research Initiative (SFARI) that aims to better understand genetic neurodevelopmen...
SFARI
Launched in 2006, SFARI is a scientific initiative within the Simons Foundation's suite of programs. SFARI’s mission is to improve the understanding, ...
Angel Aid
Angel Aid provides relief for mothers of children with rare disorders, helping them learn tools of self-care, and be listened to without judgement. To...
Lennox-Gastaut Syndrome
Lennox-Gastaut syndrome (LGS) is an epilepsy syndrome that can develop over time from childhood seizures that remain uncontrolled by treatments. It's ...
Supporting Children
The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephal...
Strategies for Carers
The global coronavirus pandemic has brought significant challenges particularly for those with children with developmental and epileptic encephalopath...
COVID-19
Want to better understand better how the COVID-19 pandemic may impact children and adults with genetic epilepsy and developmental and epileptic enceph...