Rubinstein-Taybi Parent Group - RTS Parent Group

Organization URL(s)

lbaxter@ruraltel.net
www.rubinstein-taybi.org/

Other Contact Information

P.O. Box 146
Smith Center, KS 66967

800-244-3386 (Voice - Toll-free, Special Friends Foundation)
888-447-2989 (Voice - Toll-free, RTS Parent Group)
785-697-2989 (Voice)
785-697-2985 (FAX)

Description

The Rubinstein-Taybi Parent Group was established in 1984 to provide a support network for parents of children with Rubinstein-Taybi syndrome. Rubinstein-Taybi syndrome, or broad-thumb-hallux syndrome, is a congenital disorder characterized by short stature, beaked nose, slightly malformed ears, a highly arched palate, antimongoloid slant of eyes, small head, broad thumbs and/or great toes. Mental retardation is associated with the disorder. The goals of the Rubinstein-Taybi Parent Group are to educate and support families affected by the syndrome; provide basic information to the public; and encourage research of the disorder. The group includes families throughout North America.

Online Resources

Rubinstein-Taybi Syndrome: Book for Families
http://www.rubinstein-taybi.org/html/book_for_families.html

Print Resources

The Rubinstein-Taybi Parent Group publishes and distributes a pamphlet describing Rubinstein-Taybi syndrome and additional sources of information. In addition, the group has collected numerous journal articles on various aspects of the syndrome. There is also a booklet available on Rubinstein-Taybi Syndrome.