The Sturge Weber Foundation

Although Sturge-Weber syndrome can be managed, there is no cure. Research for Sturge-Weber syndrome (as with all rare diseases) is often hampered by the lack of investigators interested in researching it or from an unavailability of tissue samples or the difficult to find clinical trial participants necessary to conduct a study.

• Research Testimonials (pdf)
  Is tissue donation important? Is research to find answers to our questions possible without it?
  
  

• Tissue Donation
  The Hope of Research Sturge-Weber Syndrome (SWS), and Klippel-Trenaunay (K-T), are just two of the perplexing medical mysteries whose answers will only be found with continued and dedicated research. For this reason, the brain and tissue banks were instituted with the expressed goal of advancing meaningful research.
  
  

• Current Studies Seeking Participants

Notice of these studies is being offered for informational purposes and should not be seen as an endorsement of the study by The SWF.

• Transportation
 Links to organizations who can assist your find air transportation.