Finding Support

Getting in touch with other parents or professionals in the same situation as yourself is one of the best ways to cope with the challenges of caring for or treating a girl with Rett Syndrome. There are several ways to seek out other people who understand.

• Join Rettnet. Rettnet is a Rett Syndrome e-mail discussion group. You can sign up by going to IRSF's web page and following the instructions there.
• Read Rett Syndrome guestbooks. Several Rett Syndrome web pages have guestbooks, and the entries often describe a girl with Rett Syndrome, or contain questions that other parents and professionals are hoping to find answers for. Many of the people who have signed have expressed interest in being contacted by others. This is an excellent way to find a new friend.
• Contact the International Rett Syndrome Foundation. Call (800-818-7388) or click here and ask the IRSF staff for the names of families willing to be contacted in your state or country. They can also tell you if your region has a regional representative you may contact to learn of support groups or events in your area.