Sturge-Weber Syndrome Clinic | Patient Resources

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Contact the Sturge-Weber Syndrome Clinic

  • 1-617-355-6388
  • International: +1-617-355-5209

A diagnosis of Sturge-Weber can be difficult both for your child and for your whole family. From your first visit, you’ll work with a team of professionals who are committed to supporting your family. Below is a list of groups and resources you may also find helpful:

  • Sturge-Weber Foundation: Supports patients and their families and facilitates research on Sturge-Weber syndrome and associated port-wine birthmark conditions.
  • Epilepsy Foundation: Many patients with Sturge-Weber syndrome experience seizures and epilepsy. This foundation provides support for patients and their families. 

These resources on education and Early Intervention are helpful for families who live in Massachusetts:

If you live outside of Massachusetts, our team can direct you to other helpful resources.

Resources at Boston Children’s

The Boston Children’s For Patients and Families website offers information on the wide array of support services available to families at Boston Children’s.

We are grateful to have been ranked #1 on U.S. News & World Report's list of the best children's hospitals in the nation for the third year in a row, an honor we could not have achieved without the patients and families who inspire us to do our very best for them. Thanks to you, Boston Children's is a place where we can write the greatest children's stories ever told.”
- Sandra L. Fenwick, President and CEO

Boston Children's Hospital
300 Longwood Avenue, Boston, MA 02115
For Patients: 617-355-6000
For Referring Providers: 844-BCH-PEDS | 844-224-7337