How You Can Help
The success of the DEE-P Connections will depend almost entirely on wide participation and engagement by as much of the DEE community as possible.
We have created a center for sharing information about topics in many ways unique to families with children severely affected by DEEs. Many excellent resources already exist on a number of the topics envisioned but are currently housed on disease-specific group websites. There is no unified source that brings together all of these critical resources or makes them optimally accessible for DEE families. This project provides infrastructure for participants to work collaboratively in developing webinars and assembling comprehensive resources on the topics most important to this community.
Many of us are enmeshed in the challenging day-to-day care of a child struggling with many challenges, often life-threatening.
The role of partners is to share any relevant content and help create a seamless connection to families who might find support in this new project.
They are all primarily managing active and ambitious organizations (often with children affected by a rare epilepsy) and we hope to support them by providing this support to the more severely impacted subpopulation of their communities.
Please consider becoming an active partner by indicating an area where you believe you can help.
Please Note
We warmly and enthusiastically welcome families with children severely affected by DEEs to become active partners in this project. However, we do not want to diminish your engagement in your own disease-specific advocacy groups. Only there will you make the connections to participate in vital registries, help support and keep informed about disease-specific research, learn about clinical trials, support vital fundraising and participate in family conferences and meetings. We structured this effort to serve the overlapping and often under-addressed concerns and priorities of the often small sub-population within these organizations of the children most severely affected by DEEs. Our intent and commitment is to complement and not compete with the many wonderful disease-specific advocacy groups.