Lupus Awareness, Education, and Management Activities

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CDC supports national organizations and other stakeholders to raise awareness about lupus signs and symptoms, increase knowledge about the importance of early detection and treatment, enhance the self-management skills of people with lupus, and improve health care providers’ ability to make accurate diagnoses.

Overview

Developing and Disseminating Programs to Build Sustainable Lupus Awareness, Knowledge, Skills and Partnerships (CDC-RFA-DP15-1511) is a 5-year cooperative agreement that CDC initiated on September 30, 2015, and concludes on September 29, 2020. This funding opportunity supports the American College of Rheumatology (ACR) and Lupus Foundation of America (LFA) to improve the health of people with lupus by providing education and resources to improve overall well-being.

Through key stakeholders, the two grantees are empowering people and health care providers to:

  • Recognize lupus signs and symptoms.
  • Improve time and accuracy of diagnoses.
  • Increase availability of lupus self-management programs and resources.

This work is important to address the limited availability of and access to lupus information and resources among people at risk for lupus, people with lupus, and health care providers.

Goals

The goals of this cooperative agreement are to:

  • Raise public awareness about the complexities of lupus, the importance of early identification and diagnosis, and effective lupus care management.
  • Develop or improve the availability of evidence-based lupus self-management programs and resources for people with lupus and their caregivers.
  • Enhance and leverage local, regional, and national partnerships to provide information and resources for people with lupus, caregivers, health care providers, and academics.
CDC- Funded Organizations

American College of Rheumatology (ACR)

Key Activities

  • Develop and promote self-management resources for people with lupus nephritis. The program will disseminate self-management resources to patients and engage rheumatologists and nephrologists to provide accurate and timely information through a patient engagement model.
  • Develop a turnkey grassroots campaign, the Playbook Project, to raise lupus awareness among academic institutions and members of faith-based organizations. The Playbook is a step-by-step implementation guide for organizations to implement the campaign in their communities.
  • Promote lupus awareness in the Latino community through the Promotores Project, which provides lay Hispanic/Latino community health workers (known as promotores) with specialized training to provide basic health education in their community. The project will train promotores on key lupus messages and provide practices on raising lupus awareness in their communities.
  • Raise awareness of the signs and symptoms of lupus and promote lupus resources available through the Be Fierce. Take Control.TM national awareness campaign. ACR is promoting the campaign in collaboration with the Lupus Foundation of America (LFA).
  • Develop and hold small group provider sessions in rural Area Health Education Centers (AHECs) with rheumatologists and rural health care providers. The rheumatologists deliver a presentation on lupus followed by time for networking and relationship building.
  • Promote and improve the Teaching Fellows in Lupus Project that enlists fellows in rheumatology to deliver seminars to frontline providers on the diagnosis and treatment of lupus.
  • Develop and promote a lupus guide to educate non-rheumatology providers who serve American Indian/Alaska Native communities about recognizing the signs and symptoms of lupus, the risks of lupus for those communities, and making appropriate referrals to specialists.
  • Implement action plans, such as promoting school lupus learning tools for nurses in defined school districts, in collaboration with National Association of Chronic Disease Directors, Georgia Council on Lupus Education and Awareness and the Big Bend Rural Health Network.
  • Distribute and promote lupus education and resources through the Lupus Initiative website and other methods. Education and resources are available through printed material, social media, mobile apps, CME courses, and videos and wallboards in healthcare examination and waiting rooms

Completed Projects

Contact Information
Sheryl McCalla
Senior Director, Vice President, Strategic Initiatives
American College of Rheumatology’s Collaborative Initiatives (COIN) Department
2200 Lake Blvd. NE
Atlanta, GA 30319
404.633.3777 | SMcCalla@rheumatology.org

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Lupus Foundation of America (LFA)

Key Activities

  • Develop and promote an online self-management program for people recently diagnosed with lupus (diagnosed in the past 12 months). The program will address the following key behaviors:
    • Working with your health care team.
    • Managing medications.
    • Managing the symptoms of lupus.
    • Managing stress and distress related to lupus.
  • Develop and maintain the National Resource Center on Lupus website, providing a one-stop online resource for all things lupus—from diagnosis to treatment to living and relationships.
  • Create and promote the Take Charge email series to connect people with lupus to important resources and help them to learn the skills they need to manage everyday life with lupus. The goal of the series is to provide useful tips and strategies that empower people with lupus to take charge of their health and wellness.
  • Create and promote The Expert Series, a series of online educational videos for people with lupus. Each month a leading lupus expert presents the latest information on a key topic such as tips for managing medication side effects, lupus and brain fog, and lupus nephritis, among many others. Videos are posted to the National Resource Center on Lupus.
  • Convene and maintain Partners United for Lupus Sustainable Education (PULSE) to promote grant activities through information dissemination, partner engagement, and partner education.
  • Raise awareness among targeted audiences about lupus through the Be Fierce. Take Control. campaign and other paid and unpaid social media campaigns and promotions. Lupus Foundation of America is promoting the campaign in collaboration with the American College of Rheumatology.
  • Increase availability of culturally sensitive, age appropriate materials about childhood-onset systemic lupus erythematosus in English, Spanish and Mandarin.
  • Develop a Continuing Medical Education (CME) strategy for family medicine physicians to recognize the signs and symptoms of lupus, diagnose as appropriate, and be familiar with standard treatments. LFA is developing this in collaboration with the American Academy of Family Physicians.
  • Conduct physician outreach and engagement to support grant activities.

Completed Projects

Contact Information
Mary T. Crimmings
Vice President, Marketing and Communications
Lupus of Foundation of America
2121 K Street N.W., Suite 200
Washington, DC 20037
www.lupus.org
202.349.1155 | crimmings@lupus.org

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