This grant application requests support for annual conferences sponsored and coordinated by Genetic Alliance over a five-year period. Genetic Alliance, was established in 1986, and is a network of 1,000 disease specific organizations. The mission of Genetic Alliance is to transform health through genetics to accelerate the translation of research to services. This year's conference will be held on July 17-19, 2009, at the Bethesda North Marriot in Rockville, MD, a handicapped accessible hotel. This conference theme is Discovering Openness in Health Systems. The overall goal of each of the Conferences is to provide a forum for discussion about the various challenges, solutions, and opportunities in the research translation pipeline. Participants will discuss best practices in basic and translational research, encourage and solidify systemic connections, and examine methods for collaboration among researchers, clinicians and disease advocates. The annual conferences held by Genetic Alliance have consistently drawn a large, diverse, and dynamic group of participants-last year's annual conference was attended by more than 200 people including advocates, health professionals, policymakers, researchers, industry professionals, and community leaders. The target group for participants is disease communities. We define these communities as composed of the advocate leaders, the clinician-scientists and the basic researchers for each disease. The types of diseases represented at the meeting are diverse: cardiovascular, mental health, skin, eye, liver, kidney, pancreas, bone, cancer, brain, metabolism and blood. These diseases affect individuals across the lifespan. Our conference attendance is typically 65% women, and 15% minority participants.
The aim of this and upcoming conferences is to create a forum for the cross-fertilization of ideas between highly diverse groups within the genetics community in order to accelerate research and treatment development. Genetic Alliance is committed to increasing collaboration across various fields - including diseases and disease pathways, federal agencies, and institutions. We build each year upon the prior year's conference. All of the tools we develop are open source and publically available, including all materials from the conference. Previous tools have included the Genetic Alliance BioBank, Disease InfoSearch, the Resource Repository and various best practices.
As genetics and genomics become more integrated into public health, it is vital that all stakeholders have forum to convene and share ideas in open space. With a range of workshops and panels, the link between genetic research and health outcomes are clear.
