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Lupus Foundation of America, Inc.
LFA is the only national force fighting to solve the cruel mystery of lupus while giving caring support to those who suffer from its impact.
Telephone: 202-349-1155
http://www.lupus.org

CFC Code: 10566
IRS EIN Number: 43-1131436
AFR: 20.7% What's this?

$25 provides Lupus Now magazine to a physician’s office for one year so individuals seeking care can learn about lupus and resources available to them.

$50 provides 100 informational brochures for a local health fair so community residents can learn about lupus, its symptoms and health effects.

$100 provides telephone helpline reference books for a local community hotline service to provide individuals answers and resources to help them learn about lupus and cope with the disease.

$250 provides training for an individual to serve as leader of a community-based lupus support group for individuals who are newly diagnosed with lupus and their family members.

$500 provides information packets to 100 individuals who call the Lupus Foundation of America information helpline seeking to learn about lupus.

$1,000 provides an online webinar that enables individuals with lupus around the world to learn from lupus experts.

$2,500 provides a summer fellowship for a post graduate medical student to work with an established lupus investigator.

$5,000 provides a continuing medical education program session for local physicians on the diagnosis and treatment of lupus.

$10,000 supports a lupus researcher for one month to search for the causes and cure for lupus.


Awareness

• Continued support of The Advertising Council’s multi-media lupus awareness campaign, which generated nearly $10 million in donated media during 2011, and a total of $70 million since the launch of the campaign in 2009.The LFA is the Founding Partner on the campaign sponsored by the U.S. Department of Health and Human Services Office on Women’s Health (OWH).

• Reached more than 71 million people through the media, which showcased personal stories and demonstrated the urgent need for a full arsenal of new, safe, effective, and more tolerable treatments for lupus. Launched Lupus Voices Across America, a new Web site to provide a community for people with lupus and supporters to tell their stories and give a voice to their experience. More than 1,200 people added their voices, and their stories were shared with more than 32,000 individuals through the Web site.

• Experienced tremendous growth through our Web site and social media, generating nearly 4 million visits to our Web site. The LFA Web site is ranked number one, compared to other Web sites for people looking for information about lupus. Twitter followers increased 270 percent and the number of Facebook fans increased by 175 percent, and continues to grow.

Research

• Awarded research grants to advance the science and medicine of lupus in the areas of pediatric lupus, lupus nephritis, cutaneous lupus, adult stem cells, mid-to-late stage translational, and male lupus. Visit the LFA's National Research Program(www.lupus.org/research) for a complete list of 2011 award recipients. Since its inception, the LFA has provided nearly $24 million to more than 400 investigators at 100 institutions.

• Secured a journal publication of the first-ever global consensus definition of a lupus flare, which will provide more precise measurement over time of treatment effectiveness, and will improve the design of future lupus clinical trials. The Lupus Foundation of America Flare Definition (LFA-FLARE), was developed through a multi-year, international collaborative effort led by the LFA.

• Expanded training of clinical investigators on standards to interpret and utilize diagnostic instruments commonly used in lupus clinical trials. More than 2,500 researchers and investigators in 53 countries have registered with the online portal, Lupus Foundation of America Professional Online Instrument Training Program (LFA POINT Program), and the program continues to grow.

Advocacy

• Secured through Congress an additional $4.4 million in Fiscal Year 2012 for the National Lupus Patient Registry under the direction of the Centers for Disease Control and Prevention (CDC). The study will provide a more accurate estimate of the number of people with lupus in the United States and the burden of disease on individuals and their families. To date, Congressional support for the study is more than $22.9 million.

• Generated more than 2,500 phone calls, e-mails, and visits to Members of Congress through the Lupus Foundation of America's Thirteenth Annual Advocacy Day. Advocates urged support for increased federal funding to bridge the gaps in lupus research, awareness, and education.

• Stimulated $2.4 million for lupus research through the U.S. Department of Defense (DoD) Congressionally

· Directed Peer Reviewed Medical Research Program (PRMRP). Since 2005, more than $11.9 million has been awarded to support important lupus research studies.

· Conducted meetings with key officials at the National Institutes of Health (NIH), Centers for Disease and Control and Prevention (CDC), U.S. Food and Drug Administration (FDA), and with Members of Congress to educate policy makers on the needs of people with lupus. The LFA also recruited individuals with lupus and their family members to testify on the critical need for an arsenal of treatments for lupus during an FDA Advisory Committee hearing on a potential new treatment for lupus.

Education and Support

· Provided education, support, and referrals to approximately 200,000 individuals through outreach and education efforts, including sponsoring more than 200 support groups and conducting more than 400 patient education programs.

· Launched the national education program, Lupus: Learn from the Experts™, as a series of telephone conferences hosted by leading lupus experts that cover topics of interest to people at different points in living and coping with lupus. The 2011 series addressed the following topics: clinical trials, kidneys and lupus, central nervous system involvement, Social Security Disability Insurance and parents caring for children with lupus.

· Distributed 135,000 copies of our award-winning magazine LUPUS NOW® to individuals with lupus and their families, policy makers, and health professionals. LUPUS NOWcontains the latest information on clinical research and coping strategies.

 

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