The Sickle Cell Community Consortium is a multi-stakeholder collective comprised of community-based organizations (CBOs), patient and caregiver advocates, community partners and healthcare and research advisers. Collectively these partners form the General Assembly of CBOs, the decision-making body of the Consortium. Organized in a manner similar to the United Nations, each partnered CBO retains their autonomy while joining collectively with other sickle cell stakeholders to apply a model of Collective Impact to identify, prioritize and address needs and gaps within the sickle cell community.
All partners participate in the yearly Leadership Summit and General Assembly of CBOs. This Summit is designed to provide a series of workshops and seminars to provide training and guidance in Best Practices for maintaining effective and efficient CBOs., including sessions on grant writing, developing corporate and community partnerships, CBO branding, marketing and messaging, and more. The Summit also hosts the General Assembly, during which sickle cell stakeholders apply a model of Collective Impact to identify and prioritize major needs, gaps and concerns within the sickle cell community. All stakeholders carry equal weight in deciding the collective priorities for that calendar year. All partners are asked to participate in developing and implementing solutions to the problems identified. Each partner assists in solution implementation for at least one prioritized project and must serve on at least one Consortium Committee for that calendar year. All elections and committee selections occur during the business meeting during the annual summit. For more information on the Consortium organization, committees or the 2019 General Assembly, visit the ABOUT US section.
Partners are also required to serve on at least one of the 10 Infrastructure Committees and to agree to, and follow, the Consortium Code of Conduct. Follow the links to learn more about the General Assembly and the Code of Conduct.
Currently, there is not a fee or membership dues for partnering with the Consortium. Partners are asked to participate in at least one main fundraising activity organized by the Consortium each year. All partners have access to CBO resources, including access to the online webinar platform (up to 100 participants), yearly website and social media checkups, access to the Consortium finance team, best practices webinars, discounts on website development and tax document preparation, group discounts to sickle cell conferences and symposiums. By combining our voices Consortium partners are able to make a greater impact in our communities.
Ways to partner with the Consortium:
CBOs: All sickle cell-focused community-based organizations are invited to join the Consortium team. We request each CBO complete a simple credentialing process to verify the authenticity and fiscal credibility of each partner organization. The information obtained also enables SCCC to seek out a diverse range of funding and resource modalities to support the fiscal and resource needs of our entire community.
Junior CBOs: There are many groups doing wonderful work in the community that are not yet prepared for full credentialing. The Consortium works to provide these groups with resources necessary to fully establish themselves as 501(c)3 not-for-profit organizations. Junior CBOs must be actively working towards obtaining official non-profit status and will have obtained 501c3 status within two years of joining the Consortium team. The Consortium will provide guidance to assist if needed.
Sponsored-Patient Organizations (SPOs): Sponsored-patient organizations are patient or caregiver groups, who do not intend to seek 501c3 status, but are instead sponsored by a healthcare provider or other healthcare entity. Patient/Caregiver support groups are often in this category. SPOs may also be sponsored by fully credentialed CBOs established no fewer than 4 years prior to sponsorship. SPO sponsors accept fiscal responsibility for the sponsored SPO.
Independent Patient and Caregiver Advocates: Patients and Caregivers are the lifeblood of the Consortium as they determine the direction of all Consortium platforms and projects and identify the needs and gaps within the sickle cell community. All patients and caregivers, who are NOT part of the executive leadership of an existing sickle cell CBO, foundation or group, are invited to partner with the Consortium. Consortium bylaws mandate equal representation by independent patients and caregivers in all projects, platforms and initiatives. Patients and Caregivers who are part of the leadership of existing organizations are encouraged to partner with us as delegates of that organization.
(PLEASE NOTE: It is very important to consider all options very carefully before creating a new CBO. If you have a project or a service that you want to organize with, or for, the sickle cell community, instead of creating a new CBO you may wish to develop a new project. The Consortium will provide resources and guidance to help develop your project and connect you to an existing CBO. We also encourage all advocates with a new project idea to place the project on the docket for discussion at the yearly General Assembly of CBOs. Each year the patients, caregivers and advocates of the General Assembly work collectively to complete prioritized projects.)
We welcome all sickle cell patients and caregivers to join us.