Discover effective strategies for caring for your child with developmental and epileptic encephalopathies (DEE) at home. Benefit from the insights of other parents who have faced the challenges of managing DEE and have valuable experiences to share.
Seizure management involves a blend of medical, technological, and alternative approaches. From medication to advanced therapies and personalized monitoring. Find information to help improve seizure control, providing hope for more effective, individualized care.
Non-seizure challenges often affect various areas like behavior, communication, and physical health. Our resources provide guidance on managing these issues, offering support to improve the overall quality of life for those facing multiple health concerns.
A Place For you
If you have a child with a DEE, then this is the place for you. We are parents helping parents to best care for their children with a DEE. We understand the challenges of such a complex life and have A TON of resources for you.
What we do...
Beyond the resources we provide for families, we've brought together 45+ partner organizations from across the globe to fight these terrible disorders. By coordinating our actions and pooling resources, we are able to leverage our collective knowledge to move the needle and bring improved outcomes to all those with a DEE.
Incredible Numbers
Countries
Our resources have been used by families in more than 120 countries. Our website's translation feature ensures vital resources are accessible worldwide, breaking language barriers to support families across the globe.
Patient Advocacy Groups
Uniting DEE patient advocacy groups (PAGs), fostering collaboration to combine resources, share knowledge, and drive progress for families and individuals affected by rare and complex epilepsies.
Raised to Date
We have raised over $1.2 million to support critical research and resources for DEEs. We continue to drive progress toward better treatments and improved care for affected families.
Our Partners
