Advancing Clinical Measures for DEE Patients
Partner with Us to Improve Outcomes for Severely Affected Children
About The Inchstone Project
The Inchstone Project is a groundbreaking collaboration to create tailored tools that capture small but meaningful progress in children with developmental and epileptic encephalopathies (DEEs) and neurodevelopmental disorders (NDDs). Launched in 2022, the project addresses a critical gap in clinical trials, ensuring the voices of the most severely affected individuals are heard. By developing validated measures that prioritize what families value most—communication, cognition, and awareness—The Inchstone Project aims to improve quality of life for families and shape clinical trials to reflect their needs, opening pathways to life-changing therapies. We invite your organization to partner with us in this vital work.
Why Partner With Us?
What You Gain:
- Actionable Community Data: Receive dashboards with unique insights from the DEE Parents Speak Survey.
- Advocacy Impact: Ensure your community’s needs influence clinical trials and FDA discussions.
- Visibility: Be featured in groundbreaking research, posters, and presentations.
- Early Access: Financial partners gain exclusive insights and join our Steering Committee.
How You Can Get Involved
1. Become a Financial Partner
Support critical development efforts with a financial commitment in 2025-2026. Gain a seat on the Steering Committee and access to emerging data.
2. Participate in Research
Promote the DEE Parents Speak Survey in your community. With just 20 responses, your group receives a customized dashboard and representation in overall data.
Make a Difference for Your Community
Join many leading PAGs, including SCN2A, ASXL1&3, LGS, and SCN8A, who are already seeing the impact of collaboration. Help ensure clinical trials reflect your families’ priorities and open pathways to new treatments.
Become a Partner Today
Contact us at info@inchstoneproject.org or call us at (202) 599-0444 for more information.