Help DEE-P Connections fulfill its mission of enhancing support for families of children with severe Developmental & Epileptic Encephalopathies (DEEs)
Our Key Initial Activities
- Offer periodic webinars on issues specifically relevant to severe DEEs
- Provide a consolidated online resource center to include recorded webinars and the best available materials on issues relevant to severe DEEs
Examples of Topics for Webinars Include
- What are DEEs?
- Developing IEPs for children with severe DEEs
- Malnutrition and the decision to get a G-tube
- Applying for Medicaid and Katie Beckett waivers
- Promoting healthy DEE-sibling relationships, and many more!
DEE-P Commitment to Collaborative Partners
The DEE-Project is designed to provide information and resources to a wider community of families dealing with severe DEEs by leveraging and supplementing initiatives of existing rare epilepsy organizations. The effort will be structured, managed and organized to strengthen and extend the support that existing organizations are able to provide their communities. Eight patient advocacy groups are the founding partners, working together to build this initiative, sharing resources, expertise and experiences. Please join us as a Collaborative.
Benefits to Existing Rare Disease Groups
This approach seeks to reduce this populations’ isolation by providing a comprehensive and accessible online resource for families across the rare epilepsies who experience many similar challenges. This resource should serve both rare epilepsy organizations who are already providing some very useful information to these families but in a more consolidated form as well as newer organizations with more limited capacity to provide diverse resources. Populations get more and better information, existing resources are more widely disseminated, and the need for many similar duplicative and costly efforts are reduced.
While not the initial focus of this effort, this collaborative effort may hold promise for efficiencies and new directions in research. Cross-cutting research on severe phenotypes across etiologies could present an unexplored avenue to the potential development of treatments and strategies to improve the quality of life of the most severely affected children across a range of rare epilepsies.
How Partnering Organizations can support this initiative
- Announce DEE-P Connections resource to your community and share notifications of upcoming webinars
- Share and help identify existing materials your organization has developed for inclusion in the resource center (they will be properly attributed to your organization and linked back to your website or wherever they “live”)
- Share staff/member experts time to plan/co-lead a webinar