Cowden Syndrome Support Group

Because Cowden syndrome (CS) 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 national groups that may benefit you or someone you know.

American Cancer Society
1599 Clifton Road NE
Atlanta, GA 30329
1-800-ACS-2345
Genetic Alliance
4301 Connecticut Avenue NW, Suite 404
Washington, DC 20008-2369
1-202-966-5557
National Society of Genetic Counselors (NSGC)
401 N. Michigan Avenue
Chicago, IL 60611
1-312-321-6834
NSGC's website 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.

Read our Cowden Syndrome Patient Guide.

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