The Consortium was founded in February of 2014 to provide a platform to unify, strengthen and increase the visibility of SCD community-based organizations
https://linktr.ee/sicklecellconsoritum The Sickle Cell Community Consortium (SCCC) was founded in Februrary of 2014 to provide a platform to unify, strengthen and increase the visibility of sickle cell community-based organizations (CBOs) throughout the country. This Consortium is founded on the belief that a "house divided against itself cannot stand" and a commitment to create an outstanding model of commUNITY and patient engagement. We have developed a unified entity, modeled after the U.N. where the individual needs of each CBO can be identified and addressed as a unit, while maintaining the autonomy of each individual organization. SCCC is not a CBO, nor does it seek to replace the actions or activities of existing CBOs. Sickle cell disease CBOs exist to address the needs of the sickle cell community. Our mission is to assist the CBOs in identifying the needs of their patient population, to aggressively seek funding to address those needs, provide infrastructure support and a platform for collaboration and cooperation between individual CBOs, governmental agencies and pharmaceutical and corporate stakeholders. Our CBO partners span across the country and are actively involved in direct patient services, support services, education, awareness and advocacy. These CBOs collaborate with the Consortium and with each
other on a wide range of projects to benefit the sickle cell community. These projects include, but are not limited to, the development of educational materials and sickle cell toolkits, transition services geared towards the teen
market, bereavement services and funeral cost assistance, medical accountability, legislative calls to action, and the creation of a platform to assist data collection and analysis for patient-reported outcomes and research. With strong commitment to fund-raising, charitable donations and grants, we have built, and will continue to strengthen and grow, a network of patient and advocate-powered community non-profit organizations dedicated to redefining what it means to live with, conquer and overcome sickle cell disease.
