Understanding Lupus and Its Impact on Our Community

Beyond individual struggles, lupus has a profound impact on community dynamics. It can disrupt work, education, and family life, creating challenges in maintaining day-to-day activities. Disparities in healthcare access often exacerbate these challenges, particularly for marginalized groups.
Understanding lupus is essential for fostering a supportive community environment. Increased awareness leads to better support networks, improved healthcare services, and informed policy decisions. Community advocacy plays a critical role in driving research and resource allocation to manage and mitigate the effects of lupus.

Ongoing research into the causes, treatment, and management of lupus is vital. Coupled with community-based support groups and educational programs, these initiatives help improve quality of life for those affected and pave the way for more effective healthcare solutions.

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GOAL Study

Georgians Organized Against Lupus (GOAL) is an initiative led by the Division of Rheumatology at Emory University. This project was launched to gain a deeper understanding of how lupus impacts patients’ lives. Contributions from GOAL participants have been instrumental in revealing the extensive burden of lupus on daily living and the challenges many face in accessing healthcare and managing their condition. Your experiences are vital—by sharing how lupus affects you, we can drive further research, refine management strategies, and inform policy changes to enhance healthcare outcomes, acknowledging that health determinants vary greatly from person to person.

Project ECHO

Project ECHO aims to disseminate expert knowledge and broaden the capacity to deliver best-practice care across diverse regions. By linking specialists with local healthcare providers via virtual clinics and videoconferencing, the program creates a vibrant learning community. Participants receive ongoing mentorship and real-time feedback as they navigate complex patient cases, ensuring high-quality care reaches even the most remote areas.

Research Updates with Dr. Sam Lim

Traditional epidemiological research has improved our estimates of lupus prevalence and mortality across various demographics. Now, emerging studies are highlighting the profound influence of psychosocial factors and healthcare system dynamics on disease outcomes. These insights are crucial first steps toward designing clinical and public health interventions that address and ultimately reduce health disparities within lupus populations.

Project CHANGE

Project CHANGE is dedicated to empowering people of color—especially Black individuals—by providing the education and resources necessary to participate meaningfully in lupus clinical research. This initiative supports informed decision-making and ensures that participants receive the highest standard of care when they take part in research studies. In parallel, Lupus Therapeutics is uniting healthcare providers, advocacy groups, community health organizations, and local leaders to collaboratively tackle the barriers that lead to underrepresentation of minorities in lupus research.

Patient Perspectives Panel

The patient panel offers a forum for individuals living with lupus to share their personal journeys. This discussion provides an in-depth look at how lupus affects everyday life, addresses the hurdles encountered during diagnosis and treatment, and emphasizes the critical role of support and advocacy in managing the condition.

Physician Panel Discussion

 This interactive session gives patients the chance to engage directly with a panel of doctors. By asking questions and receiving expert guidance, patients can gain a better understanding of their lupus and discover practical strategies for managing their health.

Legislative Updates with Representative Kim Schofield

Political determinants of health refer to the systematic processes of structuring relationships, allocating resources, and exercising power. These factors work in tandem to either promote health equity or exacerbate health disparities. Addressing these systemic issues through informed legislative actions is essential for creating opportunities that support better health outcomes for all.
 

Wellness and Workforce Solutions for Lupus

This study is designed to empower women of color living with lupus by enhancing self-management skills. By participating, you’ll receive personalized support from Health Coaches with lived experience and gain access to the Health360x platform to help you track your goals and education.