Bannayan-Riley-Ruvalcaba Syndrome
A Guide for patients and their families
Support Groups and Resources
Sarah Burton, UI Health Care
Joy Larsen Haidle, MS, CGC, UI Health Care
Heather Hampel, MS, CGC, Ohio State University
Peer Review Status: Internally reviewed by the authors
First Published: 2002
Last Revised: 2002
Support Groups and Resources
Bannayan-Riley-Ruvalcaba syndrome can be complicated to diagnose, therefore, it is important to address all questions and concerns with your physician and genetic counselor. No two people with this diagnosis will experience the same journey. Pay particular attention to any physical changes you see and discuss them regularly with your physician. Living with any type of genetic condition can be challenging, but living with BRR is a challenge you can face with a good medical team as your partner.
Remember that different people deal with this diagnosis and its challenges in different ways. For some the path may be long and difficult while others adjust in less time with less difficultly. Just remember to give yourself time to acknowledge your feelings.
The members of your health care team—physicians, genetic counselors, and nurses—serve as an excellent resource and you should discuss your situation with them. Another valuable resource can be other people who have been in similar situations. Support groups can connect people who are dealing with similar issues and bring them together in a supportive environment. Here are several groups that may benefit you or someone you know.
American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
1-800-ACS-2345
www.cancer.org
IMPACC—support group for people with intestinal polyposis and colorectal cancer
P.O. Box 11
Conyngham, PA 18219
717-788-1818
NSGC—National Society of Genetic Counselors
233 Canterbury Drive
Wallingford, PA 19086-6617
610-872-7608
www.nsgc.org
Genetic Alliance—genetic information and links to genetic counselors in your area
4301 Connecticut Avenue NW #404
Washington, DC 20008-2304
1-800-336-GENE
www.geneticalliance.org
The Johns Hopkins Site for Colon Cancer
http://www.hopkinskimmelcancercenter.org/CANCERTYPES/colon-rectal-cancer.cfm?CANCERID=78
* A web site that may answer many questions about genetics
Patient Run Support Group
www.cowdenssyndrome.com
* This web site is for personal support for individuals and families and is not monitored by medical professionals.
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