The final part of the Congress will connect the strands of day 1 and consider what can be done. There will be a keynote on how communities can effect change followed by reports from the five Communities of Interest, concluding with a session where attendees will be asked what they want to do, or will do, as a follow-up to the Congress. Attendees will film each other outlining their commitments as part of both the larger Commons community and as part of their Community of Interest. There will then be a closing keynote including a report on the large "game changer" by Stephen Friend.
At the conclusion of the Congress attendees will understand how their own work connects to the greater movement of change in how we must approach biology and how biology relates to health care. Participants will be challenged to articulate how their work from the previous day and over the next year might lead to more sharing, better resource allocation, and faster progress. Participants will have established a set of communities ready to do active work.
Sharon F. Terry is President and CEO of Genetic Alliance, a network of more than 10,000 organizations, of which 1,200 are disease advocacy organizations. Genetic Alliance enables individuals, families and communities to reclaim their health and become full participants in translational research. She is the founding CEO of PXE International, a research advocacy organization for the genetic condition pseudoxanthoma elasticum (PXE). As co-discoverer of the gene associated with PXE, she holds the patent for ABCC6 to act as its steward and has assigned her rights to the foundation. She developed a diagnostic test and conducts clinical trials. Terry is also a co-founder of the Genetic Alliance Registry and Biobank. She is the author of more than 100 peer-reviewed articles. In her focus at the forefront of consumer participation in genetics research, services and policy, she serves in a leadership role on many of the major international and national organizations.