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Patient Resources

gabrielfamilyThe Sturge-Weber Foundation has a wealth of great resources, and tools to help you have improved quality of life throughout your journey with Sturge-Weber syndrome and related birthmark conditions.  Our resource materials will educate you on various topics, answer any questions you may have and to inform you about the latest news.

 

We print and distribute material on these conditions tailored for individuals with these conditions, those involved in their care, and the professionals who treat them.

 

Be sure to check out the entire website, use the search engine and remember we are only a phone call or email away! 

 

Contact 800-627-5482 or This e-mail address is being protected from spambots. You need JavaScript enabled to view it .”

 

  • Find a Medical Professional
  • Network and Connect: Get involved with our online support group, Facebook, twitter, education days and more!
  • Related Sites:  Link to more site related to SWS, KT, Seizures and Neurological issues, glaucoma and vision impairment, port wine birthmarks and vascular malformations, disability resources, patient assistance programs, and other medical links
  • Treatment Assistance: Learn more about SWF Centers of Excellence, physician referrals, insurance appeals, and applying for disability.
  • Toolbox: Link to medical record keeping forms, resources for working with insurers and an Emergency Room Guide for SWS
  • http://rdcrn.org/BVMC/register/registry.htm:  The RDCRN Patient Contact Registry is a method by which patients with rare diseases can register themselves with the RDCRN in order to be contacted in the future about clinical research opportunities and updates on the progress of the research projects. The contact registry is anonymous and free of charge.