Thursday, November 21, 2024
11/21/2024
Lupus is an extraordinarily complex, chronic autoimmune disease that presents a significant risk to the public’s health. Founded in 1977 as the only national force wholly dedicated to lupus, the Lupus Foundation of America, Inc. leads our country in the development and delivery of broad-scale initiatives for people with lupus (PWL), health care providers, and the public. We propose a continuation of Partners United for Lupus Sustainable Education (PULSE): a nationally integrated awareness and education initiative that addresses the complex and varied life course of lupus. We will build on the progress we have achieved under the current CDC cooperative agreement and continue the critical work we have done to build sustainable lupus awareness, knowledge, skills and partnerships nationwide, and promote the use of effective self-management tools and services. The PULSE program will sustain and improve our existing lupus awareness resources and self-management tools (e.g., Be Fierce. Take Control.®, Take Charge, the National Resource Center on Lupus, and Strategies to Embrace Living with Lupus Fearlessly). Through PULSE we will engage our extensive network of national partners to reach PWL in every state and execute a coordinated initiative to: 1) raise awareness about lupus signs and symptoms and what to do if you have lupus; 2) raise awareness about lupus self-management tools/services; and 3) improve self-management behaviors among PWL. This multi-pronged approach will help to improve one’s journey with lupus by supporting the individual through the initial process of asking “could it be lupus?” to ensuring that those diagnosed “know lupus” and are equipped with the tools to effectively self-manage the disease. Our ultimate goal is to provide sustainable support and access to self-management programs and resources to PWL with a unique focus on disparately affected populations. The Lupus Foundation of America will work with its national network of affiliated chapters, regional offices and support groups, and in collaboration with the CDC, the National Lupus Partners Network, PWL and other stakeholders with national reach and experience working with target populations, to develop, implement and sustain PULSE. We will use our strong leadership position in the lupus community to build upon our currently growing national network of diverse partners whose individual strengths combine to create a meaningful, comprehensive and impactful approach. We will work with the CDC to ensure that our activities under PULSE are complementary to those carried out by the agency and its partners. The PULSE program is built on a strong evidence base. Our long-term program outcomes focus on improving health outcomes among PWL, including: earlier time to diagnosis, increased number of PWL getting needed care and ongoing treatment, improved lupus care and care coordination, and improved quality of life among PWL. Key evaluation questions include but are not limited to: whether the program contributed to increased awareness of lupus signs and symptoms, what to do if lupus is suspected, and effective lupus self-management tools and resources; whether the program contributed to increased knowledge of and improved behaviors of lupus self-management skills; and whether the program contributed to increased referral to and use of lupus self-management tools and resources.
HHS’ Tracking Accountability in Government Grants System (TAGGS) website provides access to detailed descriptions of grants, loans, aggregated direct payments and other types of financial assistance awarded by the HHS Operating Divisions (OPDIVs) and the Office of the Secretary Staff Divisions (STAFFDIVs).
