Project Summary

The Families of Sturge-Weber (FamSWS) will form an advisory group of patients, caregivers, families, and other stakeholders to include scientific leaders from the Sturge-Weber Foundation (SWF) Centers of Excellence to lead the SWF Patient Engagement Conferences. This advisory group will direct the planning, implementation, evaluation, and ultimately the dissemination of these conferences. Staff from the SWF will support programmatic and logistical aspects of the conferences. The advisory group will fully participate in the conferences, chair panels, and lead discussions that can bring patients and families together with the leaders in the scientific community to share ideas and experiences related to Sturge-Weber syndrome. The conferences will provide an additional forum where patients and stakeholders can plan to work together, and it will also provide the foundation to set up the patient-centered outcomes research/comparative effectiveness research agenda for Sturge-Weber syndrome for the future.

Project Information

Karen Ball, BA
The Sturge-Weber Foundation

Key Dates

24 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022