DEEP Strategic Plan
2026-2030
Accelerating Progress & Improving Lives, Together
DEEP is pleased to share our 2026–2030 Strategic Plan. This is a comprehensive, collaborative roadmap to accelerate progress for improved outcomes and quality of life for all those impacted by the many etiologies of Developmental and Epileptic Encephalopathies (DEEs) and other severe neurological impairments, including but not limited to, Neuro‑Developmental and Neuro-Degenerative Disorders.
Built with deep engagement across families, clinicians, researchers, hospitals, epilepsy centers, biotech partners, and advocacy organizations, this plan outlines how DEEP will work across the ecosystem to drive education, research, advocacy, and partnership efforts that meaningfully improve care and outcomes.
DEEP’s Distinctive Strengths
Our vision for the next five years builds on DEEP’s unique position in the DEE/SNI landscape:
DEE‑Centered Mission
Focused entirely on the unique needs of our community.
Proactive, Tailored Support
Personalized guidance for families at every stage.
Global Community Reach
Connecting and empowering caregivers worldwide.
Collaborative Partnerships
Unifying PAGs, clinicians, researchers, hospitals, and industry.
Organizational Depth
Broad ecosystem reach paired with deep, specialized expertise.
Caregiver‑Led
Grounded in authentic lived experience and family priorities.
Our Strategic Pillars
DEEP’s plan is organized around three mission pillars, supported by a strong foundation of strategic partnerships. Across these areas, ten initiatives define what we will do, why it matters, and the measurable goals we will achieve over the next five years.
Education & Empowerment
Goal: Expand trusted, accessible education for families and clinicians.
Key Initiatives:
- Educate and empower families.
- Expand clinician knowledge.
Accelerate Research
Goal: Advance outcome measure development and cross-DEE research.
Key Initiatives:
- Drive cross-DEE research efforts.
- Spearhead outcome measure development: The Inchstone Project.
Advance Advocacy
Goal: Strengthen DEE representation in policy and industry.
Key Initiatives:
- Deepen communication and influence with Congress & federal agencies.
- Mobilize public awareness and grassroots advocacy.
Partnerships & Collaborations
Goal: Establish, maintain, and strengthen collaborative partnerships across diverse stakeholders.
Key partnership Initiatives:
- Patient Advocacy Groups
- Clinicians, researchers, and hospitals
- Epilepsy and rare disease organizations
- Pharmaceutical and biotech companies
How the Plan Was Built
This roadmap reflects the real‑world needs and priorities of the community we serve. Through a structured, inclusive process, DEEP engaged:
- Diagnosed and undiagnosed families
- Clinicians and multidisciplinary care teams
- Researchers and scientific leaders
- Rare disease and epilepsy advocacy partners
- Biotech and biopharma innovators
Our planning process included a kickoff summit, nine months of working groups, targeted focus groups, PAG outreach, ecosystem audits, and synthesis of community insights into ten strategic initiatives with clear five‑year goals.
Building Our Future Together
DEEP’s strength comes from collaboration. Our Strategic Plan is both a commitment and an invitation to families, PAGs, clinicians, researchers, hospitals, epilepsy centers, biotech partners, and all who share our mission.
Together, we can ensure that children with DEEs and other severe neurological impairments are seen, heard, and supported by a fully aligned community working to improve care, treatments, and outcomes.
Get Involved with DEEP
Getting involved is easy! Visit our Volunteer page and let us know What you'd like to help with. If you're leading an advocacy organization, learn about how your community might be benefit from partnering with DEEP.