Lupus Foundation of America, Inc.

Across the nation, our education programs and services all have a common purpose: To improve the lives of all people affected by lupus. We bring together all stakeholders with interest in lupus to translate research findings into useful programs, information, and tools for people with lupus and health professionals to ensure they know about new means to diagnose and manage lupus.

Through our national network of local chapters, regional offices, and community-based support groups, the Foundation provides caring support and referrals to people with lupus, their families, and their caregivers, and help guide them through the complexities of living with lupus.

We aggressively conduct outreach efforts to increase public understanding of lupus, and share stories of those who have lupus, through national awareness campaigns, celebrity engagement, and online and social marketing.

The National Resource Center on Lupus (NRCL) is the Lupus Foundation of America’s comprehensive gateway and central point of connection for those people whose lives are affected by lupus. This multi-dimensional center serves individuals with lupus, their loved ones, health care professionals, policymakers and the general public by providing accurate, evidence– -based, reliable, and up-to-date information on the most relevant topics related to lupus. The LFA NRCL speaks to the diverse needs of the population and connects the lupus community to improve health and overall quality of life. The NRCL provides information in a variety of formats (video, print, and audio) and in English and Spanish with select content in Chinese. The Center for Disease Control (CDC)funded early development of the Center through a multi-year grant to start this initiative, but the additional investment is paramount to continue content development relative to the lupus community.

The Lupus Foundation of America’s National Health Educator Network, which comprises nurses, social workers, and other allied health professionals, provides critically needed services to people affected by lupus, many of whom feel alone and isolated without knowledge of our access to resources and information. The Network delivers non-medical counseling, disease education and information and physician referral. The health educators return phone calls, email and respond to in-person inquiries, primarily from people living with lupus and their caregivers. People at all stages of their journey living with the disease as well as their caregivers and loved ones seek our help. As awareness of lupus has grown so too has the demand for this service. We have experienced continual year-on-year growth in demand. Since the Network’s inception in 2006, we have responded to over 60,000 requests for help. Recently, we have experienced the most significant growth in requests for information about financial support, patient assistance programs, and medical coverage and care planning, diet, nutrition and exercise and resources to support caregivers. Spanish speaking requests for help and services have also seen a consistent increase.

Pediatric lupus is understudied and recognized. 15% to 20% of lupus begins in childhood prior to 18 years of age and has worse outcomes than adult lupus. In 2006, we established the Michael Jon Barlin Pediatric Research Program with the generous support of the Wallace H. Coulter Foundation making us the first and only lupus advocacy organization in the United States with a dedicated childhood lupus research agenda. We would like to expand our Pediatric Research Program to include funding for more experts currently conducting research in this field.

The LFA also is working towards creating a "home” for children with lupus which serves as a center for the information, tools and resources children with lupus need. This "home” will be created through in depth research for this target audience. We plan to conduct focus groups, interviews and surveys with caregivers and children with lupus to identify their needs. We will use the data gathered to develop a plan for content, programs, resources and tools to be created. We will provide these resources in the format that children and their caregivers identify that they want to receive information.

A diagnosis of lupus changes everyone’s lives, not merely the person now living with this disease. It is the caregiver — the child of a parent with lupus, the parent of a child with lupus or the spouse of an individual with lupus — who is often and mistakenly overlooked. The LFA Caregiver Task Force supports the development of programs and services tailored to the needs of this diverse community. This task force represents parents, children, spouses, and partners of individuals with lupus. They give much-needed voice and perspective to the diverse community which is essential as they manage the health of the loved one as well as their well-being. The LFA continues to develop materials and resources that address the pressing and most-requested issues directly relevant to lupus caregivers.

The Lupus Foundation of America advocates on behalf of all people with lupus, their families, and the health professionals who care for them. We rally all lupus stakeholders to educate government officials, policymakers, and industry leaders on the urgent need to expand public and private investment in lupus research, education programs, and support services. Through our advocacy efforts, we have stimulated more than $90 million in federal funding for lupus research and education.

The Foundation holds an annual policy summit in Washington, DC. Each year, hundreds of lupus advocates from across the country visit Capitol Hill, and thousands more join virtually, to urge Members of Congress to help advance the development of new lupus treatments, increase funding for lupus research and education and ensure people with lupus have access to affordable, quality health coverage and care.

The Foundation is the convener for MAPRx, a coalition of patient, family caregiver and health professional organizations committed to safeguarding the well-being of patients with chronic diseases and disabilities who rely on Medicare Prescription Drug Coverage. MAPRx member organizations advocate on behalf of these beneficiaries and collaborate with national and state policymakers to ensure they have access to the medication therapies they need and deserve.

The Foundation is the founder of the World Lupus Federation, a coalition of more than 200 lupus groups around the world, united to improve the quality of life for all people affected by lupus. Through coordinated efforts among its global affiliates, the Federation creates greater awareness and understanding of lupus, provides education and services to people living with the disease, and advocates on their behalf. The Federation is the sponsor of the annual World Lupus Day observance on May 10.