The Sickle Cell Disease Association of America, Inc., (SCDAA) has been designated to serve as the National Backbone Organization for the Health Resources & Services Administration (HRSA) Sickle Cell Disease Newborn Screening Program. As the national backbone organization SCDAA will work with community-based organizations across the country to implement a strengthened approach to care, collective impact and strategic activities within the Sickle Cell community. Primary components of the collective impact model include:
1. Support a national structure
2. Develop and implement a common agenda.
3. Provide continuous communication.
4. Conduct reinforcing activities with community based-organizations (CBOs)
5. Develop and implement a shared measurement system.
SCDAA in collaboration with both its members and non-member Community Based Organizations (CBO’s) crafted a multifaceted national program to identify patients with sickle cell disease and link them to high quality care within their communities. The program will utilize the collective impact model strategy to create outcomes and solutions for better access to care within five key regions throughout the United States.
Through community-based efforts the program will institute a systematic community engagement recruitment process in order to find patients needing access to care and assist them with continuous care coordination and education. CBO partners will mobilize community health workers throughout the regions to help insure the success of this strategy. In addition, SCDAA will collaborate with other key partners to provide training, program development, system change and more importantly a common measurement system for better data outcomes.
“The SCDAA is eternally grateful to have been selected for this opportunity and excited to implement our strategy for strengthened support and services nationwide,” said SCDAA President & C.O.O Sonja L. Banks. “As the nation’s largest and oldest member-based, sickle cell advocacy organization we continue to fight for the betterment of those impacted by sickle cell disease. The overarching goal through this grant is to increase access to care while building a larger community of informed, active and motivated patients. We are more dedicated than ever to leading the charge for positive change in the sickle cell community. Stay tuned for further announcements.”
About the Health Resources and Services Administration
The Health Resources and Services Administration is part of the U.S. Department of Health and Human Services. HRSA is the primary Federal agency responsible for improving access to health care services for people who are uninsured, isolated, or medically vulnerable. For more information about HRSA and its programs, visit www.hrsa.gov.
About Sickle Cell Disease Association of America
The Sickle Cell Disease Association of America, Inc., (SCDAA) serves as the nation’s only volunteer organization working full time on a national level to resolve issues surrounding sickle cell disease and trait. Since 1971 the organization has been on the forefront of improving the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions. In addition, SCDAA has been and remains instrumental in promoting the search for a cure for all people in the world with sickle cell disease.
For more information regarding the grant award or to work with SCDAA in promoting the SCD Common Agenda please log onto www.sicklecelldisease.org or email us at firstname.lastname@example.org