Collaboration Opportunities for Industry

As a convener of the Dravet syndrome community, DSF has the tools, experience, and connections you need to accelerate your Dravet syndrome treatment development program. Our established resources facilitate each phase of development. Join us in working together to address the many unmet needs for the treatment of Dravet syndrome.

Contact us to connect and learn more.

At UCB, our collaborative partnership with the DSF allows us to support the unique needs of those living with and caring for loved ones with Dravet. It helps to shape everything from our clinical development programs to our family support materials, creating meaningful impact for the community we serve together.

DSF provides an exemplary model for partnerships between industry and patient advocacy organizations. Their collaboration has produced excellent insights to inform clinical development plans, support regulatory interactions, and help with community engagement and education about how gene therapies may improve the lives of people with Dravet syndrome.

Biocodex’s patient-centric approach has come to life by partnering with the DSF for several years. DSF provides us the opportunity to engage with the community, learn more about their needs and stand side-by-side with them in the fight against Dravet.

Why Dravet syndrome?

Dravet syndrome is a rare developmental and epileptic encephalopathy that affects 1 in every 15,700 children worldwide, with the majority of patients carrying a mutation in the sodium channel gene SCN1A. It begins in infancy and proceeds with accumulating morbidity that significantly impacts individuals throughout their lifetime, increasing in severity in early childhood.

Current treatment options are limited, and the constant care required for someone suffering from Dravet syndrome can severely impact the quality of life for patients and families. Patients with Dravet syndrome face a 15-20% mortality rate due to SUDEP (Sudden Unexpected Death in Epilepsy), prolonged seizures, seizure-related accidents such as drowning, and infections.

Why Now?

We believe that life-changing treatments are on the horizon because Dravet syndrome has:

An Identified Causal Gene
Predictive Cell and Animal Models
Established Centers of Excellence
Clear Diagnostic Guidelines and Accurate Medical Codes
Published Characterization of Natural History
An Educated, Organized, and Engaged Patient Community

Our Resources

DSF is the largest nongovernmental funder for research focused on Dravet syndrome, worldwide. We act as a convener, connecting patient families, clinicians, researchers, and biopharma. Our resources include:

Network of over 3,200 Dravet Syndrome Patient Families
Scientific and Medical Advisory Boards
Academic Research Funding
Commercial iPSC Cell Lines (in development- anticipated 2024)
24 US-based Comprehensive Care Centers
Listings for Enrolling Clinical Trials & Overview of Pipeline
Annual Research Roundtable
Biennial Family & Professional Conference
Voice of the Patient Report from our 2022 Externally-Led Patient Focused Drug Development Meeting

Why DSF?

As the leading Dravet syndrome research and advocacy organization, the Dravet Syndrome Foundation (DSF) has invested over $9.1M in research, leading to significant advancements in our understanding of the disease mechanisms and clinical presentation of Dravet syndrome. Even larger than the dollar amount is the impact DSF has had on the field of research and clinical care through connecting disparate groups of stakeholders, advocating for research, amplifying the voice of the patient, and curating information. DSF has partnered with pharmaceutical and biotechnology companies at nearly every stage of development.

Below are examples of ways DSF has partnered in the past with companies at various stages of development:

Early Stages of Discovery and Preclinical Studies

patient-family perspective on unmet medical needs, priority symptoms to address, and benefit-risk considerations
information on validated disease models
insight on the overall field of discovery and development
connections with Key Opinion Leaders and potential research collaborators
where appropriate, Letters of Support from DSF

Late-Stage Preclinical/ Pre-IND

formation of caregiver panels for clinical trial planning
insight on Patient Focused Drug Development for Dravet syndrome
participation in meetings with regulators to provide the patient voice
direct feedback on trial processes and patient-facing materials
opportunities for industry to present preclinical work and study plans to the patient and professional communities

Clinical Study Phases

curated webpage for actively enrolling clinical studies
patient-community outreach and education on clinical study opportunities
opportunities for industry representatives to present information about ongoing studies and interact with the community
dissemination of information about trial progress and results

Post-Approval

raising patient-community awareness of new treatment options
collaboration with clinical community on updating consensus guidelines to incorporate new treatment advancements
feedback on patient-facing materials
dissemination of results of ongoing studies to the community