Abstract
Patients with FAP are guaranteed to have one major abdominal surgery in their life. They are also subject to cancers and benign disorders in other organ systems, some of which can be life threatening. Steering a course through life while avoiding preventable disease and complications of treatment, and maintaining good quality of life is a challenge for health care givers, patients, and their families. A successful voyage calls for clinical cooperation between providers and patients, education and understanding, and expertise and experience. FAP patients and families should be involved in a registry or genetic center, not to the exclusion of local practitioners but to their benefit. In this way the best of care is given and the best of outcomes ensured.
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