Evidence Library

Abstract: This news article describes how a patient advocacy group has helped further biomedical research. The group was set up by a family with a rare genetic condition. They established a blood bank, persuaded families from all over the world to sign up and held meetings with researchers to encourage them to use this resource. Their efforts have helped the successful identification of the gene responsible for this condition.

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Categories: health
Identifying topics, prioritising and commissioning
impact on funding/commissioning
impact of public involvement
journal article

Date Entered: 2009/01/28