For children with complex needs like developmental epileptic encephalopathies (DEEs) transition to adult care can be challenging.
Torie Robinson's lived experience makes her a powerful advocate for improving care for those with epilepsy.
Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment.
Ciitizen is partnering with the SCN2A community and rare disease groups to empower patients and families with access to their health data and advance research.
Children, adolescents and adults with autism can have significant sleep problems. Waking at night and early morning waking are some of the most common.
Simons Searchlight aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).
Launched in 2006, SFARI is a scientific initiative within the Simons Foundation's suite of programs. SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research.
Angel Aid provides relief for mothers of children with rare disorders, helping them learn tools of self-care, and be listened to without judgement.
Lennox-Gastaut syndrome (LGS) is an epilepsy syndrome that can develop over time from childhood seizures that remain uncontrolled by treatments.
The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies.