I had the opportunity to attend the Epilepsy Precision Medicine Conference in the Washington, DC, area this week, where DSF was one of the event sponsors. This two-day conference was the second chapter to an initial meeting that took place in 2014. The goal of the meeting was to bring together experts with a vested interest in the development of precision medicine for genetic epilepsies, such as Dravet syndrome, and map out a strategy for accelerating the pace with which this goal can be achieved.

In attendance were scientists, clinicians, and representatives from advocacy organizations, industry, and government. There was the opportunity to exchange ideas about key advances, prospects, and issues in a range of fields, including epilepsy research, clinical care, big data, biotech, and public policy. Throughout the meeting many sessions had a direct relevance to the Dravet syndrome community, including sessions on epilepsy genetics and diagnostics; discovery of novel drug targets; new therapeutics; the use of big data in precision medicine; and accelerating clinical trials.  

One session focused solely on the family and patient experience, with three families sharing their personal journey on stage. In addition, more than a dozen epilepsy organizations had patient advocates in attendance. This assured that the meeting kept the patient voice front and center and kept the professionals engaged and inspired and showed them the impact of the important work that they do. The meeting concluded with breakaway sessions on a variety of topics to narrow down appropriate next steps to address the multiple challenges in the field. Patient engagement opportunities at meetings like this are of such importance to the rare epilepsies because the expertise of patients and caregivers can provide learning experiences that could not otherwise occur, while also broadening the current understanding of these diseases. The lived experience of these diseases is unique experiential knowledge that is not possessed by the professional stakeholders in our communities. By sharing our stories, not only do we help to educate on our needs and gaps in care, but we also help to promote a patient-centered approach in future efforts.

Congratulations to Daniel Lowenstein, MD, the Robert B. and Ellinor Aird Professor of Neurology and Executive Vice Chancellor and Provost at the University of California, San Francisco, Director of the UCSF Epilepsy Center, and Director of Physician-Scientist and Education Training Programs for the UCSF School of Medicine, as well as the planning committee (including SAB Co-Chair Lori Isom, PhD) for their work on an exciting, productive, and thought-provoking meeting. A white paper will be available with the themes, findings, and future initiatives that were developed from this meeting sometime next year, which we will share with our community.