Sturge-Weber Syndrome Clinic

Resources for families

We know how difficult a diagnosis of Sturge-Weber can be, 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.

Please note that neither Children’s Hospital Boston nor the Sturge-Weber Syndrome Clinic at Children’s unreservedly endorses all of the information found at the sites listed below.

The Sturge-Weber Foundation supports patients and their families and facilitates research on Sturge-Weber syndrome and associated port wine birthmark conditions.

Many patients with Sturge-Weber syndrome experience seizures and epilepsy. The Epilepsy Foundation provides support for patients and their families.

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

• The Federation for Children with Special Needs, a Boston-based organization, provides an extensive manual on education for children with special needs, “A Parent’s Guide to Special Education”, at their website.
• These websites give information on Early Intervention in Massachusetts, a service available to families of children with developmental difficulties between birth and three years of age:
  • The Massachusetts Office of Health and Human Servicesprovides detailed information.
  • Information is also available at MassResources.org.
  • Family Ties of Massachusetts manages a listing of Early Intervention programs around the state.

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

Resources at Children’s

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