Resources and Support Groups for Cowden Syndrome
Because Cowden syndrome can be complicated to diagnose, it is important to address your questions and concerns with your physician and genetic counselor. Remember that no two people with this diagnosis will have exactly the same symptoms. Pay particular attention to physical changes and discuss them with your physician regularly. Living with any type of genetic condition can be a challenge, but living with CS is a challenge you can face with a good medical team as your partner.
Remember that different people deal with this diagnosis in different ways. For some the path may be long and difficult while others adjust in a shorter time with less difficulty. 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
www.cancer.orgGenetic Alliance4301 Connecticut Avenue NW Suite 404
Washington, DC 20008-2369
www.geneticalliance.orgNational Society of Genetic Counselors – NSGC
401 N. Michigan Avenue
Chicago, IL 60611
www.nsgc.org (includes a search tool to find a genetic counselor in your area)
Patient run support groups*:
* These sites are for personal support for individuals and families with Cowden syndrome and are not monitored by medical professionals.
Return to Cowden Syndrome Patient Guide index