Assessing and addressing ongoing information and support needs among individuals with Lynch syndrome

Background In 2008, Lynch syndrome patients requested referrals to a support organization, prompting the authors to assess available resources. While general information about Lynch syndrome was readily available from multiple sources including the internet, updated, detailed information and psychosocial support was largely unavailable. Based on patient responses to a subsequent needs assessment, an annual patient-oriented conference was organized. We report the results of the needs assessment and response to the conferences.