Health Resources and Services Administration

Description

The purpose of the Sickle Cell Disease (SCD) and Hemoglobinopathies Initiative is to take a life course approach to enhance, improve, or expand the ability of State and local public health agencies and health care providers to provide quality care for screening, counseling, or health care services to individuals across their lifespan having sickle cell disease or are carriers of sickle cell with an emphasis on emerging populations. While the focus of this initiative is individuals who have or are at risk for SCD, individuals with other hemoglobinopathies should be included. This initiative will establish seven cooperative agreements divided into two projects: Project 1. Six community-based projects; and Project 2. One national coordination and evaluation Center. Project 1. The purpose of this program is to fund up to six cooperative agreements that will use a life course approach to demonstrate a model system of comprehensive care and medical management for individuals and families from birth and across the life span, at risk or affected by sickle cell disease and other hemoglobinopathies. Such models should involve a complex network of services ranging from newborn screening and follow up, diagnosis, counseling, related education, referrals to health and support services and transition to adult health care service providers. The goal is to strengthen the provision of the medical home for affected persons and other services of specialized medical care for management and treatment of sickle cell disease and other hemoglobinopathies. Emphasis will be placed on outreach, education and access to services to emerging populations. The community based cooperative agreements will model patient/family/professional partnerships among individuals with sickle cell disease and other hemoglobinopathies, family groups, State newborn screening programs, other relevant community based organizations, hemoglobinopathy treatment centers and community based primary care health care providers, medical home, and public health organizations. Project 2. The purpose of the National Coordination and Evaluation Center (NCEC), cooperative agreement is to use a life course approach to facilitate the implementation of activities. The program is designed to overcome challenges of newborn screening and follow up, as well as barriers that individuals and families face with sickle cell disease and other hemoglobinopathies. The program will address challenges that individuals, their families and health care professionals face in accessing needed health services and genetic health services information relevant to these blood disorders. The grantee will work with HRSA funded sickle cell disease and other hemoglobinopathy programs to: 1. Increase the knowledge of hemoglobinopathies for individuals and families from birth to across the life span living with sickle cell disease or thalassemia, or as carriers of sickle cell disease or thalassemia, and of their providers who are served by the HRSA funded sickle cell disease community based programs. 2. Strengthen partnerships between HRSA funded hemoglobinopathy programs, community based organizations, and other relevant partners. 3. Support efforts to provide outreach and education to emerging populations. 4. Improve the quality of hemoglobinopathy services and activities of the HRSA funded hemoglobinopathy programs.

Who can apply

• Others

Contact

CallCenter@HRSA.GOV<br/>CallCenter@HRSA.GOV<br/>
CallCenter@HRSA.GOV