Policy Advocacy
What is Policy Advocacy?
Policy advocacy is how DEEP turns families' stories into a united voice for change. DEEP is the only caregiver-led group for families of people with Developmental Epileptic Encephalopathies (DEEs) and severe neurological impairment (SNI). We make sure these families help shape the laws that affect them.
Our Approach at the Federal Level
Congress and federal agencies shape nearly everything in our families' lives, from health care to research funding. DEEP builds direct ties with lawmakers and agencies. We push for more research funding, faster access to treatment, and stronger protections like Medicaid and disability rights. We do this through Hill Days, FDA meetings, and other national efforts.
Why is it Important to Get Involved?
DEEs and SNIs affect hundreds of thousands of families, yet health, research, and disability systems often overlook them. Many families wait years for a diagnosis, feel very alone, and struggle to find the right care.
You do not need to be an expert to advocate. You just need to be willing to share your story.
No single fix works for every DEE or SNI family. Personal stories help lawmakers make better choices.
Policy shapes what matters most every day: jobs, health care, research funding, and disability rights.
Every voice drives change, for your family and for our community.
How Can I Get Involved?
Share Your Story
Your family's experience can shape policy and inspire others in our community.
Volunteer with DEEP
Share your time and skills to help power DEEP's advocacy efforts.
Take Action Now
Our 5 Minute Advocacy Menu
Looking to make an impact with limited time to spare? Advocate with ease by selecting one of the following options and messaging your elected officials on important issues in the epilepsy community. We will update this section with active advocacy campaigns
Featured Win
Our Executive Director testified before Congress for the National Plan for Epilepsy.
Gabi Conecker testified before the House Energy & Commerce Health Subcommittee in support of the National Plan for Epilepsy Act (H.R. 1189), joined by her son Elliot, who lives with SCN8A. It was a powerful moment for our community and an important first step, but the bill still has to pass committee and both chambers before it can become law.
Watch Gabi's testimony, then ask your elected officials to support the plan.
DEEP's Policy Advocacy Efforts
Open Comments
Open Comments
When a federal agency proposes a new rule, it publishes the proposal in the Federal Register and opens a public comment period for anyone to weigh in. DEEP submits formal comments during these windows, pairing scientific evidence with the lived experience of the DEE/NDD community to help shape proposed rules before they're finalized.
Plausible Mechanism Framework (FDA)
The FDA is exploring a new way to approve treatments for rare diseases. It would not always require large clinical trials, since there are often not enough patients to run one. Instead, it would assess whether strong science suggests a treatment could work.
DEEP asked the FDA to also count evidence from patients' daily lives, pay caregivers for their time, and give drug companies clear rules to follow.
Federal Financial Assistance (OMB)
OMB writes the rules the whole government uses to give out and manage grants, money for research and other work. OMB proposed changes to those rules.
DEEP asked for fair grant reviews, less paperwork, and to make sure patient groups can keep giving input.
Universal Changing Stations (U.S. Access Board)
The Access Board writes federal rules for making public spaces easy to use, like ramps and doorways. It proposed new rules for adult-sized changing tables in airport bathrooms, which many people with DEEs or SNI need.
DEEP asked for changing stations that are private, safe, adjustable, and built around dignity for our loved ones and what caregivers really need.
Sign-Ons
Sign-Ons
A sign-on is a letter, statement, or public comment led by another organization or coalition, where DEEP adds its name in support alongside other groups. It's an opportunity to join other organizations and show policymakers and agencies that our community speaks with one voice.
Over the past year, DEEP has joined with partner organizations to add its voice on issues including:
NIH and federal epilepsy research funding
State-level epilepsy legislation and programs
Medicaid access and disability protections
Access to genetic counseling services
FDA and CMS regulatory policy affecting epilepsy and rare disease care
FDA Engagement
FDA Engagement
Beyond comments, DEEP holds a direct seat with FDA reviewers. This brings caregiver and researcher experience straight into how treatments are reviewed.
DEEP Patient Listening Session (November 2024)
DEEP and the Rare Epilepsy Network brought seven families to speak directly with FDA reviewers. They shared what life with a DEE or SNI is really like.
Many families face the same struggles, no matter the exact cause. These include seizures, trouble communicating, and disrupted sleep. Families asked the FDA to make research easier to join. They asked the FDA to notice little but real progress. And they asked the FDA to understand why families may take real risks for a treatment that could truly help.
Critical Path Innovation Meeting (CPIM) (April 2025 with Inchstone)
A CPIM is a structured, private meeting between the FDA and outside experts. It lets them talk through new questions in drug development. In April 2025, DEEP held a CPIM with Inchstone. It brought together caregivers, patient advocates, doctors, researchers, and drug company partners. Together, they reviewed a new way to assess people with severe to profound developmental disabilities.
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- A key focus was tracking communication in people most affected by their condition. Inchstone shared their progress. They also got feedback from the FDA to improve their approach.
- This meeting is one more step toward DEEP's upcoming EL-PFDD meeting. There, caregivers will get a formal, public voice with the FDA.
- Learn more about the CPIM Process here.
Externally-Led Patient-Focused Drug Development (EL-PFDD) — Save the Date, April 9, 2027
EL-PFDD stands for Externally-Led Patient-Focused Drug Development. It is a formal, public meeting with the FDA, run by a patient group instead of the FDA. DEEP is hosting one called "DEE and SNI Voices for Drug Development." Save the date: April 9, 2027. It will give caregivers a public voice in how new treatments are made. More details are coming soon.
Epilepsy Action Network (EAN)
Epilepsy Action Network (EAN)
EAN brings together many epilepsy organizations and advocates from across the country. Together, they push for better federal policy for people with epilepsy. DEEP co-founders Gabi Conecker and JayEtta Hecker help lead EAN. This gives DEEP a voice in the group's goals and plans.
EAN spent three years building support for a National Plan for Epilepsy. That work reached a big moment in February 2026. Lawmakers from both parties introduced the first-ever National Plan for Epilepsy Act. DEEP keeps building support by meeting with Congress staff.
Policy Advocacy Resources
DEEP has organized a group of resources focused on caregiver advocacy. Follow the link below to browse the resources that have been selected from the library.