DEE-P Thoughts
Here you will find parent voices sharing their lived experiences as caregivers to their amazing children living with DEEs.
DEEP Submits Formal Comments Opposing OMB Proposal That Threatens Progress in Rare Epilepsy Research
DEEP submitted formal comments to the Office of Management and Budget (OMB) in response to its proposed revisions to federal financial assistance rules (Docket OMB‑2026‑0034). These changes, if implemented, would…
FDA Guidance To Accelerate Individualized Therapies for Ultra-rare Diseases
The FDA recently proposed guidance that will help establish a “Plausible Mechanism Framework” for individualized therapies for those with specific genetic, cellular, and molecular abnormalities.The framework seeks to facilitate faster…
Dignity in Design: Why Universal Changing Stations Cannot Wait
Are you tired of changing your loved one in the trunks of cars, on bathroom floors, or just skipping outings altogether? We are too. As a nanny and caregiver to…
Understanding Quality of Life in Developmental and Epileptic Encephalopathy
Study Overview This study examined what factors most strongly influence quality of life for 242 individuals (ages 2-50 years) with developmental and epileptic encephalopathy (DEE) and other severe neurodevelopmental conditions.…
Stronger Together: Reflections from the FamilieSCN2A Conference
Every story within our DEE community carries its own weight, wisdom, and wonder. This past August, our team had the privilege of attending the FamilieSCN2A conference in Denver to not…
Strong Bipartisan Rejection by Senate Appropriations Subcommittee to Deep Cuts to NIH and Medical Research; Directs Focus on Pediatric Epilepsies
On July 31, the Senate Appropriations Subcommittee, by a 26-3 bipartisan vote, adopted the bill providing appropriations for many health research programs so critical to continuing progress towards better treatments…
A Devastating New Roadblock to Rare Epilepsy Care and Cures
H.R.1 also known as the “One Beautiful Bill Act” just passed by Congress and signed by the President, will bring about major changes to U.S. health care. It raises devastating…
DEE Caregivers Share Urgent Needs for Accelerated Treatment and Improved Measurement for DEEs
On November 22nd, DEE-P Connections, in partnership with the Rare Epilepsy Network (REN), held a DEE Patient Listening session with members of the Food and Drug Administration (FDA). The session…
Why do I love DEE-P Connections?
Why do I love DEE-P Connections? I had never heard of a Developmental and Epileptic Encephalopathy (DEE) until we were told our daughter had one. She was just three months…