Quality of Life Measures
Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment.
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Quality of Life Measures
Ciitizen
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.
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Ciitizen
Sleep in Autism Spectrum Disorder
Children, adolescents and adults with autism can have significant sleep problems. Waking at night and early morning waking are some of the most common.
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Sleep in Autism Spectrum Disorder
Simons Searchlight
Simons Searchlight aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD).
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Simons Searchlight
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, diagnosis and treatment of autism spectrum disorders by funding innovative research.
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SFARI
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.
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Angel Aid
Lennox-Gastaut Syndrome
Lennox-Gastaut syndrome (LGS) is an epilepsy syndrome that can develop over time from childhood seizures that remain uncontrolled by treatments.
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Lennox-Gastaut Syndrome
Supporting Children in Uncertain Times
The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies.
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Supporting Children in Uncertain Times
Strategies for Carers in Uncertain Times
The global coronavirus pandemic has brought significant challenges particularly for those with children with developmental and epileptic encephalopathies.
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Strategies for Carers in Uncertain Times
COVID-19
Prof Ingrid Scheffer discusses COVID-19 and issues relevant to children and adults with genetic epilepsy / DEEs and their families.
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COVID-19