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Annual Leadership Summit

The Annual Leadership Summit and General Assembly of Patients, Caregivers and Community-Based Organizations (CBOs) is the main meeting of all Consortium partners. The Directors and Delegates from each partner CBO along with patient and caregiver key opinion leaders and advocates meet yearly in Atlanta, Georgia to identify and design Consortium priorities.

All Consortium partners from throughout the country gather annually to participate in this meeting. We use this time to provide training and best practices session on effective advocacy in the rare disease space and maintaining strong sickle cell CBOs. Participants also participate in the business meeting of the Consortium and the annual General Assembly of Patients, Caregivers and CBOs. See “General Assembly” for more information

2016 Leadership Summit Program Book.

2017 Leadership Summit Program Book.