Accelerate Research. Change Lives.
The LGS & Associated DEE Research Accelerator brings industry, academia, and patient advocacy together in a pre-competitive environment — eliminating duplication and moving the needle faster for those living with LGS and related Developmental & Epileptic Encephalopathies (DEEs).
Member Benefits Research Agenda Join Today
Built to Break Barriers, Not Build Silos
LGS and associated DEEs represent one of the most challenging frontiers in rare disease research. Fragmented efforts, redundant studies, and slow data-sharing have long impeded progress. The LGS & Associated DEE Research Accelerator changes that model — creating a single, coordinated space where the field’s best minds and resources work in concert.
- Coordinate on research priorities and shared roadblocks across member organizations
- Pool resources and expertise in pre-competitive areas to eliminate redundant effort
- Promote transparency and open communication in a secure, confidentiality-protected environment
- Facilitate structured problem-solving on priority scientific and clinical challenges
Member Benefits: What Your Organization Gains
- Early Access to Research Tools & Data: Priority access to standardized datasets, validated models, and experimental resources essential for drug discovery and development in LGS/DEE.
- Collaborative Innovation: Work directly with academic leaders, expert researchers, and patient advocates to co-develop projects, minimizing duplication and accelerating breakthroughs.
- Influence Research Priorities: Shape the Accelerator’s research agenda through governance participation and strategic planning, ensuring efforts align with your scientific and commercial goals.
- Networking & Partnering: Connect with peer companies and cross-sector stakeholders in a trusted setting. Opportunities to jointly fund and guide high-impact priority projects.
- Visibility & Thought Leadership: Demonstrate your commitment to rare disease innovation and patient impact through Accelerator communications and public engagement activities.
- Risk Mitigation & Cost Sharing: Benefit from shared models and pooled expertise, reducing individual risk and financial burden in high-cost research efforts across the consortium.
Research Agenda: Tackling the Field’s Hardest Questions
Members collaboratively set the research agenda. Initial focus areas reflect the most pressing unmet needs in LGS and associated DEE — and your team will have a direct voice in shaping what comes next.
- Stratifying LGS/DEE patients by relevant biomarkers to better assess clinical outcomes
- Using LGS/DEE natural history studies as a real-world evidence (RWE) arm in clinical trials
- Addressing mortality in LGS/DEE and identifying modifiable risk factors
- Establishing a patient-family approved, validated battery of outcome scales for LGS/DEE
- Additional topics proposed and voted on by members each year.
Ready to Make an Impact? Join Today!
The research can’t wait. Neither should you. Children and families living with LGS and associated DEEs need answers — and the organizations that move first will shape the science. Join the LGS & Associated DEE Research Accelerator as a founding member and help drive the next decade of breakthroughs.