Purpose:
The Sickle Cell Disease Association of America, Inc. (SCDAA) was awarded funding from the Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB), Division of Services for Children with Special Health Needs/Genetic Services Branch (DSCSHN/GSB) to serve as the Technical Assistance Center (TAC) for the Newborn Screening Follow-up Program. SCDAA will provide support for up to 17 Community Based Organizations (CBOs) to work with state collaborators that will improve the care and reduce rates of individuals with sickle cell disease (SCD) who are “lost to follow-up” by supporting efforts of sickle cell disease education and service coordination. SCDAA will serve as the National Coordinating Center to provide technical assistance to these CBOs in an effort to create partnerships, collaborations and networks to increase services. This program will enhance the sickle cell CBOs’ ability to ensure that individuals diagnosed with SCD receive appropriate follow-up services including counseling, education, access to a medical home, and other support services. The primary population focus will be families of individuals identified with sickle cell disease through newborn screening; however, all individuals with SCD will be included.
Program Goal:
The goal of this program is to ensure that individuals diagnosed with sickle cell disease receive appropriate follow-up services including counseling, education, access to a medical home, and other support services by supporting CBOs focused on SCD.
Program Objectives:
The CBO sub-awardee will report annually on the following program objectives:
- Train at least 150 Community Health Workers (CHWs) in SCD to work in selected health care locations in up to 17 states.
- Increase by 30% the number of partnerships (both formal and informal) among CBOs and hospitals, health systems, state public health departments, primary care providers, Federally Qualified Health Centers (FQHCs), family organizations, and others.
- Ensure at least 15,000 individuals with SCD are served by CBOs and receive care in a patient-centered medical home.
Program Sub-Awardees
SCDAA utilized an open competitive bid process to solicit experienced, knowledgeable Sickle Cell Disease Community Based Organizations who are capable of implementing the program objectives. A Request for Proposal (RFP) was issued by SCDAA October 1, 2017 and 17 organizations were awarded funds to implement program objectives.
Alabama
SCDAA-Mobile Chapter
Alabama
SCDAA-Mobile Chapter
Mission: Empowering our clients and families with knowledge through quality comprehensive programs and services.
California
Sickle Cell Disease Foundation of California
California
Sickle Cell Disease Foundation of California
Mission: To provide education and life-enhancing programs and services to individuals with sickle cell disease, to broaden public awareness about sickle cell disease to promote medical research and education to ultimately find a cure.
Cayenne Wellness Center
Cayenne Wellness Center
Mission: To improve the nutritional and mental health of the public. We achieve this mission through education, research, and public awareness initiatives and community outreach programs that promote good nutrition and mental health.
Georgia
Sickle Cell Foundation of Georgia
Georgia
Sickle Cell Foundation of Georgia
Mission: To engage, educate, and energize the community to improve the quality of life for people affected by sickle cell disease.
Illinois
Sickle Cell Disease Association of Illinois
Illinois
Sickle Cell Disease Association of Illinois
Mission: Sickle Cell Disease Association of Illinois (SCDAI) primary mission is to enhance the quality of life for people with sickle cell disease and their families. To effectively achieve this goal, SCDAI acts as an advocate for improved healthcare and services for sickle cell patients by educating and informing the community through outreach programs.
Indiana
Martin Center Sickle Cell Initiative
Indiana
Martin Center Sickle Cell Initiative
Mission: To aid and enhance the lives of those affected by Sickle Cell and associated disorders by providing client services, patient and family advocacy, and education.
Louisiana
Sickle Cell Association of South Louisiana
Louisiana
Sickle Cell Association of South Louisiana
Mission: Bringing innovative and creative programs (1) to provide financial and advocacy supportive services to persons diagnosed with sickle cell disease; (2) to provide treatment support to enhance the quality of life for those suffering from sickle cell disease; and (3) to educate the general public about sickle cell disease.
Michigan
Sickle Cell Disease Association of America, Michigan Chapter
Michigan
Sickle Cell Disease Association of America, Michigan Chapter
Mission: To maximize the quality of life of individuals living with sickle cell disease. To enable individuals with sickle cell trait to make informed decisions with respect to family planning. To provide education and testing for the general public.
North Carolina
Piedmont Health Services and Sickle Cell Agency
North Carolina
Piedmont Health Services and Sickle Cell Agency
Mission: To provide outreach, education, screening and case management for people with high-risk health problems.
New Jersey
The Sickle Cell Association of New Jersey
New Jersey
The Sickle Cell Association of New Jersey
Mission: In concordance with the mission of the Sickle Cell Disease Association of America “to advocate for and enhance our membership’s ability to improve the quality of health, life and services for individuals, families and communities affected by sickle cell disease and related conditions, while promoting the search for a cure for all people in the world with sickle cell disease.” SCANJ is here to help, educate, and advocate in the fight against sickle cell disease.
New York
Sickle Cell Thalassemia Patient Network
New York
Sickle Cell Thalassemia Patient Network
Mission: To improve the quality of life for individuals and families living with sickle cell disease, thalassemia and other hemoglobin disorders through education, advocacy and support interactions. To create a community where we can share our experiences as a collective to improve and impact the education and awareness of sickle cell disease, thalassemia and other hemoglobin disorders.
Ohio
Ohio Sickle Cell Health Association
Ohio
Ohio Sickle Cell Health Association
Mission: To provide Education, Advocacy and Support to persons and families affected and at-risk for Sickle Cell Disease through effective approaches to Sickle Cell Services.
Oklahoma
Supporters of Families with Sickle Cell Disease
Oklahoma
Supporters of Families with Sickle Cell Disease
Mission: To improve the quality of life for individuals living with sickle cell and thalassemia, children, adults, and their families within the State of Oklahoma, through systematic changes in patient care, policy, education, advocacy, family support, self-sufficiency and awareness.
Oregon
Sickle Cell Anemia Foundation of Oregon
Oregon
Sickle Cell Anemia Foundation of Oregon
Mission: To improve the quality of life of those suffering with sickle cell disorders and to inform and educate the general population. Our goal is to promote awareness of the genetic causes and health effects of sickle cell anemia and related conditions; to promote improved access to care through raising the number of sickle cell educated clinicians; to remove the stigma that sickle cell clients are drug seekers which impede the ability to provide sensitive and quality care.
Pennsylvania
Children’s Sickle Cell Foundation
Pennsylvania
Children’s Sickle Cell Foundation
Mission: To provide social, educational, and economic support for children with sickle cell disease and their families.
Texas
Sickle Cell Association of Texas-Marc Thomas Foundation
Texas
Sickle Cell Association of Texas-Marc Thomas Foundation
Mission: To enhance and improve the quality of life for individuals and families affected by sickle cell disease and related conditions.
South Carolina
James R. Clark Memorial Sickle Cell Foundation
South Carolina
James R. Clark Memorial Sickle Cell Foundation
Mission: To optimize the social, psychological, and physiological well-being of individuals with sickle cell disease and to decrease the incidence of sickle cell disease through genetic screening, counseling, and education.