Sturge Weber Foundation
Sturge Weber Foundation
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More about this organization
Mission
The Sturge-Weber Foundation's (The SWF) international mission is to improve the quality of life and care for people with Sturge-Weber syndrome and associated Port Wine Birthmark conditions. We support them with collaborative education and advocacy in tandem with translational research as we promote effective management and awareness.
About
The foundation drives patient engagement through diverse and robust projects, conferences and online support. The website is a rich resource of learning and uplifting stories of inspirational hope to cope with the diagnosis. The foundation sponsors an international conference every two years moving the location to allow fair access to all minimizing financial impact to attend. The foundation also sponsors regional educational conferences to build community in partnership with various clinical care network (CCN) institutions. The CCN's facilitate clinical studies and trials and annually establish goals which drive patient care and improve treatment. The foundation recently launched a task force initiative to build a rich volunteer network of knowledge and support around key areas impacting daily living and care. The Houston home office staff and remote office staff support all the above programs and projects and regularly meet to ensure strategic goals are met.