Sickle Cell Community Consortium

Overview

The Sickle Cell Community Consortium is a U.S.-based 501(c)(3) non-profit organization with the Employer Identification Number (EIN) 47-4771677. Founded in 2014, it aims to amplify and harness the power of the patient voice in the sickle cell community. The organization is composed of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners, and medical and research advisers.

History

The Consortium was established following a meeting during the FDA Patient-Focused Drug Development Initiative in February 2014. This gathering brought together community-based organization leaders and patient advisors to create a unified platform for sickle cell disease advocacy, research, health, education, and awareness. Key figures like Dr. Lakiea Bailey played crucial roles in its development.

Organization and Governance

The Consortium operates similarly to the United Nations, with each partner CBO retaining its autonomy. The decision-making body, known as the General Assembly of CBOs and Advocates, is responsible for identifying problems, developing solutions, and forming partnerships to execute strategies benefiting the sickle cell community. This assembly meets annually, typically in March, and elects a president to serve a two-year term.

Mission and Activities

The Sickle Cell Community Consortium focuses on applying a Collective Impact model to tackle social, medical, and legislative issues affecting people with sickle cell disease. It supports patients and families by promoting advocacy, awareness, education, research, policy change, and legislation. The Consortium also provides training and support for its partner organizations and oversees initiatives like the Patient-Centered Outcomes Initiative.

Partnerships

The organization invites various types of partners to join its network, including:

• Community-Based Organizations (CBOs): These are non-profit organizations that align with the Consortium's mission to improve healthcare outcomes for the sickle cell community.
• Junior CBOs: These are groups working towards obtaining formal non-profit status.
• Sponsored Patient Organizations (SPOs): These are patient or caregiver groups sponsored by healthcare providers or other entities.
• Independent Patient and Caregiver Advocates: Individuals who are active advocates in the sickle cell community.
• International Partners: Non-profit organizations from around the world.
• Community Partners: Organizations that support the sickle cell community as part of their broader mission.

Creative Content Initiative

The Consortium also promotes creative works by sickle cell patients and caregivers through workshops, labs, and funding for creative projects. This initiative aims to provide opportunities for artistic expression and storytelling within the community.