Our formal submissions to government inquiries, grounded in evidence and the lived experience of families living with developmental and epileptic encephalopathies.
In May 2026 we made a formal submission to the Senate Standing Committee on Community Affairs, setting out the evidence, priorities, and reforms the DEE community needs, alongside the collective voices of 134 families. Read the post and download both documents.
Read the postMilestones in the clinical trials and therapies that matter to our community. These are research updates, not medical advice or endorsements.
The US FDA has granted Breakthrough Therapy Designation to elsunersen (PRAX-222), an investigational antisense oligonucleotide for seizures in SCN2A-DEE caused by gain-of-function variants.
Read the postWe are building out our library of research updates, partnership announcements, and stories from our community. Subscribe to hear when new pieces are published.