Together, We Can Do This.

Welcome - We Are So Glad You Found Us!

DEE-P Connections has grown to be an increasingly full-service resource for families whose children are impacted by developmental and/or epileptic encephalopathies or DEEs. These are difficult to treat epilepsies that are accompanied by severe developmental delays and/or regression.

Our 45+ partners have a shared vision for DEE-P as a one-stop hub for DEE families - have medically complex children and are often confronting a range of medical issues that are hard to manage and treat - to access high quality resources and services. 

Our webinars and ever-growing Resource Center offer families a single place to find reliable, curated and vetted resources that are tailored to the DEE experience. The more than 70 webinars we have held are developed and led in coordination with leading experts in their fields—government institutions, research institutions and clinical centers—and are paired with a diversity of quality resources from our partners in our Resource Center. These resources are helping caregivers navigate the many challenges they face with their loved ones who have DEEs - improving their knowledge about how to address medical and care challenges, aiding them in advocating for and finding better care and ultimately improving quality of life for their families.

In 2023, DEE-P expanded beyond educational and research efforts to also provide critical support and community for DEE families. We are providing caregivers with opportunities to connect via DEE-P Discussions—panels of caregivers dialoguing on critical issues—as well as DEE-P Chats, which are unrecorded open sessions for families to be in community with one another to listen, learn, ask and talk with others who truly understand. 

Please be sure you follow us on Facebook and/or Instagram to stay on top of all we have to offer.

If you have ideas about resources we should add or webinars we should hold, please reach out to us here.

Please Join Us

Bringing together families and advocacy partners to help children with DEEs live their best lives.

We hope to see you at a future webinar!  Please also be in touch with us and share your ideas for webinars, give us feedback on the website or let us know if you’d like to volunteer to help us run this initiative. Feel free to share this resource widely. we hope you’ll find some helpful information here and continue to come back to learn more and connect with your DEE-P family.

 Introductory Webinar

IEP Webinar

You have had an amazing journey. Share your story. Hear another’s.

We hope to empower the DEE community by comparing notes, witnessing each other’s struggles, and learning more about what unites us. It starts with your story.

Understanding DEEs

Many Diagnoses. Many Variations. Many Struggles.

Learn more about developmental and epileptic encephalopathies - what are they and what common experiences (joys and challenges) we share.

Nerve Cells

COVID-19 Resources

We’ve compiled resources for you on COVID-19 to suit the specific needs of our families. You can watch our webinar with medical experts on how to keep your family safe during the pandemic here.

Featured Partners

Do We Have A Common Cause?

DEE-P Connections is a project of Decoding Developmental Epilepsies, a family foundation working to make the world better for children with rare epilepsies or developmental and epileptic encehphalopathies (DEEs).