Who to Contact
The Rubinstein-Taybi Parent Group's mission is to provide a support network for parents of children with RTS, to educate and support families affected by the syndrome, provide basis information to the public, and encourage research of the disorder. RTPG is in the process of organizing regional support groups, and does parent-to-parent matching either geographically or by similar condition or diagnosis.
The Parent Group publishes a newsletter, Roots, periodically and at no cost, and a brochure that has basic information about RTS and addresses for important contacts. They also offer a new parent packet that includes, pamphlet, information sheets, a book, group contact list and group booklet. They have a bibliography of books and articles from various medical journals and a booklet, "Rubinstein-Taybi Syndrome - A Book for Families."
RTPG collects information on physicians and researchers who treat/study the condition and disseminate this information to the membership. Information and referrals are provided on a request basis. Additionally, they host an annual conference, call for further information.
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