2018 LEADERSHIP SUMMIT & GENERAL ASSEMBLY
Evergreen Marriott Conference Resort & Stone Mountain Inn
4021 Lakeview Dr.
Stone Mountain, GA 30083
March 23-27, 2018
Greetings and happy new year!
The Sickle Cell Community Consortium is pleased to announce the 2018 Leadership Summit & General Assembly of Patients, Caregivers, and Community-based organizations (CBOs). The Consortium is a 501(c)(3) not-for-profit collective of Sickle Cell Community-Based Organizations (CBOs), Community Partners, Sponsored Patient Organizations, Patient/Caregiver Advocates and Healthcare/Research Advisors- each dedicated to sickle cell advocacy, education, research, community awareness and patient support throughout the country. The Consortium was created to provide an organizing arm to enable our communities to identify and address local and national needs, and to ensure that the patient and caregiver sits at the center of community-based solutions. We work to guarantee that the community is directly involved in all aspects of sickle cell education, awareness, advocacy, research, legislation and policy. Patterned after the United Nations, and following a model of Collective Impact, we provide a platform to “amplify the power of the patient voice”. As part of this collaborative effort, we are excited to host the 2018 Leadership Summit and General Assembly, March 23 – 27, 2018 in Stone Mountain, Georgia.
The Leadership Summit and General Assembly is the main meeting of the Consortium, during which patient and caregiver-identified priorities are identified and defined. 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: 1. Effective advocacy in the rare disease space, and 2. Maintaining strong sickle cell CBOs. Participants also participate in the business meeting of the Consortium and the annual General Assembly of Advocates and CBOs.
This year marks our third year of organized, strategic activity. By working collectively, we have:
• Launched our Patient-Centered Outcomes Initiative and Clinical Trials Initiative.
• Launched #Show-Up and Speak-up for Sickle Cell, which has ensured that patients and caregivers have the support to attend sickle cell conferences and symposiums. We’ve granted over $50K in scholarships as part of this initiative.
• Host the annual Sickle Cell Patient & Family Education Symposium (the Warrior Convention)
• Published “Define Yourself, Define Your Life: A Guide to Living with Sickle Cell Disease” as part of an ongoing Patient-Powered Educational Literature series.
• Launched a Mental Health Initiative to address the burgeoning need for mental health education and support in the sickle cell community
• Launched Warrior University, an online webinar series to provide continuous advocacy training, CBO best practices guidance and patient-facing disease education.
• And much, much more.
This year we are excited to announce our participation in two PCORI-funded, one HRSA-funded and one CDC/Georgia Policy-funded initiative. We will specifically focus on COMPASS: Community Participation to Advance the Sickle Cell Story, a PCORI: Pipeline to Proposal initiative created by the Consortium to capture the patient voice in determining patient priorities to bridge the gap between research, practice and true outcomes (change) for the sickle cell community.
Thank you for your continued support in this endeavor,
Lakiea J Bailey, Ph.D.
Executive Director Sickle Cell Community Consortium
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