Lupus Toolkit

The Lupus Foundation of America is a trusted resource for your patients - they provide education and support services to all people affected by lupus.  You can send your patients to the Lupus Foundation to find easy-to-use information, programs and resources to help them navigate every step of their journey with lupus.

Lupus Education and Awareness Resources

The Lupus Information Packet is a great place to start, it includes information on what to do if someone thinks they might have lupus, a worksheet to explain lupus to others, information on what to do if you are diagnosed with lupus and a symptom checklist. The packet also provides fact sheets on the following topics: The 5-part Lupus fact sheet series is a great resource for newly diagnosed patients and also available in Spanish. Download here or follow the link for more in-depth information.

    1. Understanding Lupus
    2. Diagnosing Lupus
    3. Treating Lupus
    4. Living with Lupus
    5. Coping with Lupus
  • The National Resource Center on Lupus (NRCL) is a collection of up-to-date resources and information on lupus. The NRCL allows for people with lupus to learn how the disease affects different aspects of their life. The living collection of information provides credible information from a trusted source.
  • Be Fierce. Take Control. Campaign is part of the LFA’s ongoing commitment to increasing lupus awareness and reducing the time diagnosis for Black/African American and Hispanic/Latina women ages 18-25. If you have patients experiencing lupus symptoms they can learn more about what questions to ask, how to have a conversation with their healthcare provider and download a lupus symptom tracker.
  • RAY: Research Accelerated by You is a lupus data platform where people with lupus and caregivers share information about their lupus experience to help researchers accelerate the development of new treatments and improve disease outcomes. Encourage your patients to join RAY and help lupus research.

Patient Education and Support Resources

  • Health Education Specialists are available to help people with lupus find trustworthy information to answer questions about lupus and how to cope with it. They are specially trained to provide people affected by lupus with free non-medical support, disease education, information and helpful resources. Spanish speaking Health Education Specialists are available.
  • Support Groups provide a safe and understanding environment where people with lupus can come together to ask questions, listen to others or lend a helping hand. There are numerous support groups available throughout the United States, meeting virtually and/or in-person!
  • Lupus & You: Answers. Advocacy. Action. is a free educational series where people with lupus, their family and friends can learn more about the latest in lupus research and managing the disease.

 Patient Self-Management Resources

  • Strategies to Embrace Living with Lupus Fearlessly (SELF) is a free online, self-care program that provides tailored support to people with lupus in managing symptoms, stress, medications and working with their health care team.
  • Take Charge is a 12-week email series designed to introduce people with lupus to tips and resources that can help them better manage lupus and its everyday challenges. Tome Control is also available with Spanish relevant information.
  • The Expert Series is an educational podcast series featuring leading lupus experts with a focus on helping people with lupus live well. Lupus experts offer invaluable insight on a variety of important topics and provide listeners with the knowledge they need to better manage their lupus.

 Physician Resources

  • Inside Lupus Research covers news from all the leading lupus research publications including peer-reviewed medical journals, public and private research centers, medical centers and government agencies.
  • Lupus Science & Medicine Journa A peer-reviewed, open access, online journal that provides a central point for publication of basic, clinical, translational, and epidemiological studies of all aspects of lupus and related diseases.
  • Professional Education. Medical education activities are available for both lupus specialists, primary care providers and nurses.
  • Researcher Funding Opportunities. Research and grant opportunities available.

Spanish Language Resources

A variety of LFA resources are available in Spanish:

Local Resources

The Lupus Foundation of America is dedicated to providing support no matter where your patients live. Find local events, news and more for you and your patients.

 

Funded through Centers for Disease Control and Prevention (CDC) Cooperative Agreement #NU58DP006907 in partnership with the Lupus Foundation of America. The content is solely the responsibility of the authors and does not necessarily represent the official views of the CDC.