As we mark the 10-year anniversary of the World Lupus Federation (WLF), we celebrate a decade of dedication, collaboration, and progress in the fight against lupus. Co-founded by the Lupus Foundation of America and Lupus Europe in 2015, the WLF has united more than 200 lupus patient organizations worldwide, establishing itself as the only global community organization dedicated to improving the lives of those affected by lupus through awareness, education, advocacy, and patient empowerment.
Here are ten of the Federation’s most impactful achievements over the past decade:
- Annual Global Patient Surveys
Every year, the WLF conducts global patient surveys to better understand the experiences and challenges faced by people living with lupus and shares the survey results widely to increase global awareness of lupus among the general public and policymakers. Thousands of people from around the world participate in these surveys annually to shed light on critical issues, such as access to care, the role of steroids in lupus treatment, and how lupus impacts organ systems. One groundbreaking survey in 2022, Impact of Lupus on Organ Systems, revealed that 87% of respondents had at least one major organ, like the skin, bones, or kidneys, affected by the disease. This data has been instrumental in raising awareness and guiding policy and research priorities. - Convening World Lupus Day
Since its founding, the WLF has played a central role in organizing World Lupus Day on May 10 each year. This global observance unites the lupus community supporters to raise awareness about the disease, its challenges, and the urgent need for improved care and research. Through community outreach, media and policymaker outreach, and sharing educational resources, World Lupus Day has become a cornerstone of the WLF’s mission. The #WorldLupusDay hashtag, on average, gets a total reach of over 9 million and more than 200 million total impressions in the past five years around World Lupus Day.
The WLF maintains a Lupus Awareness Toolkit, updated yearly with resources that lupus advocates can use to spread awareness and education messaging about lupus. Additionally, the WLF translates the annual press release into a dozen languages and releases it on World Lupus Day to share findings from the global patient survey. - “Lupus Knows No Boundaries” E-Report
The WLF launched the Lupus Knows No Boundaries e-report in 2017, which brings together firsthand experiences of people with lupus, their advocates, and those who treat them, to tell the real story of lupus, highlighting the ongoing physical and emotional needs of those who are affected by this incurable disease. This report emphasizes the universal nature of the disease, the disparities in access to care, and the resilience of the lupus community. It serves as both an educational tool and a call to action for greater global collaboration. - WLF-Member Needs Assessment
Recognizing the diverse needs of its member organizations, the WLF conducted a comprehensive Needs Assessment of its membership. This initiative provided valuable insights into the unique challenges faced by lupus advocacy groups worldwide and helped the Federation tailor its support to better serve its members. This led to the WLF conducting several educational webinars and the development of new global resources to help expand the capacity of its member organizations. - Mentorship and Guidance for Patient Advocacy Groups
Over the years, the WLF has provided mentorship and guidance to its membership, helping them build capacity and strengthen their impact. By sharing best practices, offering strategic advice, and fostering connections between organizations, the WLF has empowered lupus groups around the world to more effectively advocate for their communities. - Growth of the Global Lupus Voice
From a modest beginning, the WLF has grown from about 100 member organizations to include more than 200 member organizations across the globe today. This expansion reflects the Federation’s success in fostering a collaborative network working together to advance lupus awareness, research, and care. Each new member strengthens the collective voice of the lupus community by sharing their unique national experiences and deepening the shared experiences of the lupus community. Together their work helps build public awareness of lupus and informs the development of new therapies for everyone impacted by this devastating disease. - Translated Lupus Education Materials
To ensure accessibility and inclusivity, the WLF has translated critical lupus education materials created by the Lupus Foundation of America (LFA), such as fact sheets, into different languages. The WLF has also worked with several member organizations to create co-branded versions of the LFA’s “Understanding Lupus” fact sheet in Spanish to ensure the most accurate and localized information within each country is presented and is culturally compliant. This effort has enabled organizations worldwide to reach diverse populations and share vital information about lupus in culturally relevant ways. - Educational Presentations and Training Webinars
The WLF has hosted numerous educational presentations and training webinars, including sessions on how to create support groups and how best to respond to medical-related inquiries from people living with lupus. These resources have equipped member organizations with the knowledge and tools needed to support their constituents and foster community connections. - Creation of a Lupus Patient Charter
As part of a global working group, the WLF aided in the creation of a patient charter aimed at improving health outcomes for people living with systemic lupus erythematosus (SLE). This charter, recently published in the journal Clinical and Experimental Rheumatology, empowers patients, caregivers, patient groups, and healthcare professionals to advocate for critical reforms in healthcare practices. By fostering collaboration and amplifying patient voices, the charter will help drive meaningful change in access to care, treatment options, and policy advocacy. - Clinical Trial Education
The WLF has worked to educate people with lupus about clinical trial opportunities on a global scale. Collaborating with WLF member groups in Mexico, France, Australia, and other parts of the world, the Federation has provided educational information about lupus clinical trial opportunities, empowering patients to make informed decisions about participating in research that could shape the future of lupus care.
Looking Ahead
As the World Lupus Federation celebrates a decade of increasing global lupus awareness and empowering the global lupus community to better serve people with lupus, it remains committed to building on this foundation of collaboration and progress. Together with its member organizations, the WLF will continue to champion the needs of the lupus community, advocate for research and resources, and work toward a future where lupus is no longer a life-altering diagnosis.
We invite you to join the celebration of the Federation’s 10-year anniversary! Follow us on X and Facebook and help spread the word by re-sharing our recent posts to mark 10 years of progress in increasing global awareness and improving the lives of people around the world living with lupus. If you’re a lupus patient advocacy organization interested in joining the Federation and becoming part of this global effort, reach out to Mike Donnelly at donnelly@lupus.org and Giancarlo Pineiro at pineiro@lupus.org.