Join Our Journey Towards a Better Future
Be a part of our global community dedicated to making a difference in the lives of families affected by Developmental and Epileptic Encephalopathies (DEE).
Our Mission
At DDE, we are committed to improving the lives of families touched by DEE. Our journey began as a personal quest and has now transformed into a global initiative. Our focus is not just on advancing scientific understanding but also on fostering a supportive community for those affected.
Our Approach: Collaboration and Innovation
We believe in the power of partnership. Collaborating with families, researchers, clinicians, and industry experts worldwide, we strive to uncover new treatments and approaches to enhance the quality of life for those facing the challenges of DEEs.
Key Initiatives
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International SCN8A Alliance
- Uniting stakeholders globally to accelerate care and treatment innovations for SCN8A-related disorders.
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DEE-P Connections
- Serving a diverse community with loved ones affected by severe DEEs, offering support and resources.
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The Inchstone Project
- Focused on developing sensitive measures to track the unique progress of children profoundly impacted by these conditions.
Join Us in Making a Difference
Your support and involvement are crucial. Together, we can bridge the gap between today's challenges and tomorrow's solutions for DEEs.