WE ARE THE SICKLE CELL COMMUNITY CONSORTIUM
We are a registered 501(c)3 non-profit +organization. Our tax ID number is 47-4771677.
The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical and research advisers. These stakeholders collectively form the General Assembly of CBOs and Advocates, the decision-making body of the Consortium. The Consortium acts as an organizing entity providing the framework for the stakeholders of the General Assembly to apply a model of Collective Impact to define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change.
In February of 2014, during the FDA Patient-Focused Drug Development Initiative, a group of community-based organization leaders and patient advisors met to lay the foundation of what would become the Sickle Cell Community Consortium. Organized by Dr. Lakiea Bailey, this group made the collective decision to join efforts to create a unified platform to bring the sickle cell patient to the forefront of all matters regarding health, research, advocacy, education and awareness.
Over the span of the 18 months that followed, Dr. Bailey, Velvet Brown-Watts and Kena Drew would build upon this foundation to develop a cohesive, 501(c)(3) not-for-profit, created to harness and amplify the sickle cell patient voice.
Organized in a manner similar to the United Nations, Consortium Partner CBOs from all over the Country retain their individual autonomy, while uniting to apply a model of Collective Impact to tackle deeply rooted social, medical and legislative problems and barriers. The CBOs, along with Community Partners and Patient/Family Advisors, work together to identify and directly address community needs. The General Assembly, comprised of Partner CBOs and Advisors, form the decision-making body of the Consortium tasked with forming mutually beneficial partnerships to develop and execute strategies and solutions to address the needs, gaps and problems identified by the collective sickle cell community.
Joined by a diverse Board and Staff of patients, caregivers and supporters, the Consortium provides the infrastructure to coordinate the activities of strategic partnerships, provide training and support to Partner CBOs, and push forward collective Consortium platforms and initiatives. Last year, 2015, was focused on organizing and providing support for patients and families to “Show Up and Speak Up” at sickle cell and/or rare patient meetings and conferences. In 2016 we will build upon this by also working to actively further sickle cell research and clinical trials through our Patient-Centered Outcomes Initiative (PCOI 2016).
The Consortium is organized in a manner similar to the United Nations. The General Assembly of CBOs is the decision-making body of the Consortium. It is this group that applies the model of Collective Impact to collectively identify the problems, needs and gaps in the sickle cell consortium; develop creative, collaborative solutions to these problems; and then form partnerships to execute these solutions. Committees and project managers that will then execute these solutions are determined during our annual General Assembly of CBOs. This meeting occurs every March in Atlanta, Georgia. The president of the General Assembly is elected for a two-year term. This person also sits on the Board of Directors during their term. The Board person acts as oversight for their specific area.