Partner with Us to Advance KCNT1 Treatments
Your Pipeline. Our Data. Real Progress.
The KCNT1 Epilepsy Foundation is uniquely positioned to support pharmaceutical and biotech innovators with access to critical data, biospecimens, expert networks, and engaged patient communities.
Why KCNT1?
Single-Gene Target
KCNT1-related epilepsy offers a clear therapeutic target with a defined genetic mutation, ideal for precision medicine approaches.
Rare Disease Incentives
Ultra-rare, severe phenotype qualifies for orphan drug designation, extended patent protection, and accelerated regulatory pathways.
Robust Data Resources
Access longitudinal EEG and EMR data through our partnerships with Citizen Health, enabling better trial design and outcome measures.
Timely Opportunity
With clinical trials on the horizon (2025-2026), now is the ideal time to establish strategic partnerships in this space.
How We Support You
Biospecimen Access
Customizable access to our curated biobank of KCNT1 patient samples, supporting targeted research and biomarker discovery.
Patient-Linked Data
Partner with us to analyze EEGs and real-world EMRs for target validation and clinical trial planning through our institutional partnerships.
Patient Engagement
Access to motivated patients via our I Am Rare registry and family support network, facilitating recruitment and retention for clinical studies.
Scientific Collaboration
Join our Scientific Roundtables connecting industry, clinicians, and researchers, with opportunities for co-authorship on translational publications.
Let’s Drive Innovation—Together
Our foundation bridges the gap between scientific innovation and patient needs, providing pharmaceutical partners with unique advantages in the KCNT1 research landscape.
Discovery Phase
Preclinical Development
Clinical Trials
Regulatory Milestones
Whether you’re early in discovery or nearing IND submission, we’re ready to support your development of the next generation of KCNT1 therapies. Contact us today to explore partnership opportunities.
Partnership Guidelines for Industry and Research Sponsors
Our Commitment
The KCNT1 Epilepsy Foundation is committed to advancing treatments, supporting families, and accelerating research, while safeguarding community trust.
The KCNT1 Epilepsy Foundation will only engage in partnerships that demonstrably advance treatments, support families, and accelerate research—while upholding the highest standard of community trust.
Partnership Principles
| Area | Guideline |
| Family-Centered Focus | All collaborations shall place the well-being, dignity, and empowerment of KCNT1 families above all other considerations. |
| Transparency | All research studies must have IRB approval and clearly communicate study purpose, risks, and benefits. |
| Participant Protection | We carefully review participant burden and compensation to ensure fair, ethical engagement. |
| Scientific Integrity | Research partners are required to publish results in a timely manner. Withholding or delaying findings that could impact KCNT1 families is unacceptable. While brief delays to allow for peer review or intellectual property filings may be appropriate, results must ultimately be made accessible to researchers, clinicians, and the community. |
| Data Responsibility | We advocate for de-identified data use and strong protections for family information. |
| Communication | Families shall receive timely updates and, whenever possible, both individual and aggregate study results. Silence or indefinite delays are not acceptable. |
| Strategic Alignment | We only partner with entities that contribute meaningfully to advancing science and supporting our community’s needs. |
Why This Matters
In rare and often life-threatening conditions like KCNT1 epilepsy, timely sharing of research findings is not only a scientific best practice but an ethical imperative. Families contribute their data and experiences with the hope of accelerating treatments, not to see results withheld until after commercial milestones. Our policy reflects FDA guidance on patient-focused drug development and responsible use of real-world data, as well as international standards on transparency and publication ethics. We recognize and respect the need for sponsors to protect intellectual property and achieve a return on investment; however, the Foundation’s first responsibility is to ensure that research supported by our community serves the best interests of patients and families, not the exclusive interests of a single sponsor.
How We Support Responsible Partnerships
- Promoting approved clinical research opportunities to our community
- Collaborating on family education efforts (e.g., Clinical Trial Readiness materials)
- Supporting recruitment when appropriate and mission-aligned
- Recognizing sponsorship support transparently in public materials
- Protecting the Foundation’s integrity and mission focus at all times
Partner With Us
We welcome mission-aligned partnerships that share our uncompromising commitment to empowering families, accelerating science, and delivering meaningful hope—through action, not words.
Please contact us to learn more about partnership opportunities.
