The Sickle Cell Community Consortium is organized in a manner similar to the United Nations, wherein each CBO retains its individual autonomy and joins collectively with independent patients and caregivers to form the GENERAL ASSEMBLY OF ADVOCATES AND CBOs.  The General Assembly is the decision-making body of the Consortium and is made up of credentialed CBOs, sponsored patient groups, patient and caregiver advocates, community partners and medical/research advisers.  This group meets annually to apply the framework of Collective Impact to DEFINE and PRIORITIZE the top needs, gaps and problems within the sickle cell community, and then  collectively DEVELOP and EXECUTE patient-powered solutions to these community-identified concerns. Working in partnership with community partners and healthcare/research advisers, patients and caregivers lead the teams dedicated to tackling each priority.

In addition to determining yearly priorities, this group is responsible for major Consortium infrastructure decisions. Each partner in the General Assembly sits on at least one Committee and/or Sub-Committee responsible (in addition to one priority project).  The Committees maintain the infrastructure of the Consortium. The Consortium Charter, ByLaws and Rules of Procedure provide further information on the structure of the Consortium.

• Executive Director – The chief administrative officer of the Consortium
• Board of Directors – Consists of a working team to further the initiatives set forth by the General Assembly.  Each director acts as oversight for their defined area.  Along with Spokesperson of G.A., reviews progress of committees and G.A. and makes recommendations to further progress.
• President of the General Assembly (Spokesperson of the General Assembly) – Elected by popular vote of the General Assembly and serves as spokesperson for the General Assembly during a two (2) year term.  The President/Spokesperson of the General Assembly also serves on the Board of Directors for the duration of their term.  Multiple terms can be served.  Works closely with Main Infrastructure Committees and directly oversees the Credentialing & Ethics Committee.  Receives reports from the Main Infrastructure Committees and works with Board to compile Annual Partner Report and make recommendations to further progress of G.A. and committees.  Represents G.A. concerns with the Board of Directors.
• Secretary of the General Assembly – Appointed to assist the President/Spokesperson of the General Assembly with the fulfilment of duties.  May take Spokesperson’s place during board meetings.  Acts as recording secretary during annual General Assembly and quarterly partner reports.

The General Assembly (GA) is the main deliberative, policymaking and representative organ of the Consortium comprised of credentialed Partner CBOs, sponsored patient groups, independent patient/family advisors and medical/research consultants.  The General Assembly is responsible for implementation of collective impact (identifying problems/needs/gaps, determining solutions, and execution of those solutions)

• Credentialed Partner CBOs – Sickle Cell Disease 501c3 not for profit.  Ethically and fiscally responsibility.  Mission consistent with consortium objectives and priorities.
• Junior CBOs – This designation represents new CBOs that are actively working towards independent, 501c3 status. Junior CBOs must transition to full Credentialed CBOs within two years after partnering with the Consortium.
• Sponsored Patient Groups – Organized patient groups (such as support groups) sponsored by a provider or healthcare facility.
• Patient, Family, Caregiver Advocates –  Committed patient/caregiver advocates.  Serves as the voice of the patient/caregiver on all projects, platforms and priorities.  Maintains an active advocate profile.  Re-certified yearly.
• Medical/Research Advisors – Consult on projects and platforms.

 SUMMARY

• The decision-making body of the Consortium is the General Assembly of CBOs.
• The General Assembly is made of a voting partners from each credentialed Partner CBO, along with independent patient/family and medical/research advisors.
• The President of the General Assembly is elected by the voting members of the General Assembly.
• The President of the General Assembly serves a two year term and is a voting member of the Board of Directors for duration of their term.
• The Board, except for the President of the General Assembly, will not include individuals in executive leadership position within any General Assembly CBO.
• Any individual seeking to serve on the Board will forfeit the right to vote on any referendum or item brought forth by the General Assembly of CBOs, nor can they serve on any of the Main Committees or subcommittees.  This again excludes the President of the General Assembly.

Special Project Committees are defined annually during the General Assembly of Patients, Caregivers and CBOs. These committees are developed and staffed in response to the identified priorities of the current sitting General Assembly. For a list of past and present special project committees visit Past and Present General Assembly information page.

Main Infrastructure Committees are responsible for maintaining the infrastructure of the Consortium. The 10 Main Infrastructure Committees (Standing Committees) are:

• First Committee: Consortium Policy & Infrastructure  – Concerned with defining and creating the needed foundation basis to build and strengthen the infrastructure of the Consortium through policy, procedure, and capacity building and implementation of rules and regulations.

• Second Committee: CBO Capacity Building & Infrastructure Support – Concerned with developing and maintaining CBO capacity and infrastructure support.

• Third Committee: Credentialing – Concerned with maintaining and updating the credentialed list, annual review of credentials and/or progress reports and updates.  This committee develops and maintains the credentialing process (ie. credentialing application forms, patient/caregiver advocate profiles, etc.) and completes annual review of the credentials, fiscal and ethical compliance of new and existing partners.  Concerns are flagged for Ethics & Oversight Committee.

• Fourth Committee: Ethics & Oversight – Concerned with maintaining the ethical and fiscal integrity of the Consortium and Consortium partners.

• Fifth Committee: Patient/Family Advisory Council – Concerned with providing platforms to ensure that the sickle cell patient/family voice remains central to all Consortium projects, platforms and initiatives.  

• Sixth Committee: Administrative and Budgetary – Concerned with Consortium administrative and financial infrastructure.  Works closely with Finance team to review and approve budgets.

• Seventh Committee: Financial Growth & Development – Concerned with Consortium fiscal growth and development.  

• Eighth Committee: Immediate response committee – Concerned with new and emerging issues/concerns of the collective patient population.  Prepare report, submit to President, distributed by secretary, for immediate action.  Recommends actions.
• Ninth Committee: Legislative/Political Action – Concerned with policy, political advocacy and legislative matters of importance to the sickle cell community.  This group works with the community to define, prioritize and develop the legal and legislative agenda for the Consortium.
• Tenth Committee: Public Relations & Marketing – Concerned with the forward face of the Consortium through public relations and marketing.

*Coming Soon*

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,

Sincerely,

Lakiea J Bailey, Ph.D.
Executive Director Sickle Cell Community Consortium

Click here to view the 2016 Sickle Cell Patient Symposium Program Book.

Click here to view the 2016  Summit Program.

Click here to view the 2017 Leadership Summit and General Assembly of CBOs

Click here to view the 2017 Executive Summary

Click here to view the 2018 Leadership Summit Program

2019 Program Book

2019 Agenda At-A-Glance