The results reflected a diverse range of experiences amongst participants. Many patients reported adequate support from the genetic service both upon receipt of test results and in the longer term, whilst others were not aware that ongoing support was available. Many participants believed they and family members would benefit from increased psychological support and information. General consensus was reached that a support network, incorporating elements including a traditional support group alongside matching schemes, web-based chat forums and professionalled workshops, would be the best approach. It was felt important that such an initiative should have professional input.