Disease, Disorders, Medical Disciplines

Lupus Foundation of America, Inc.

  • Washington, DC
  • www.lupus.org

Mission Statement

The Lupus Foundation of America (LFA) is the oldest and largest national nonprofit voluntary health organization focused on improving the quality of life for people with lupus. Our unique dual mission serves the ongoing needs of people affected by lupus today while leading efforts to find a cure – from care to cure!  Through the national office in Washington, DC and a nationwide network of chapters, offices, support groups and community representatives, the LFA conducts programs of research, education, and advocacy.  The LFA is leading efforts to bring national attention and resources to bear upon lupus in order to shine a light on this medically underserved disease, accelerate the pace of medical research on lupus, build support for the needs of those affected by lupus, and elevate lupus to a place of prominence on the nation’s health care agenda.

Main Programs

  1. Bringing Down the Barriers - National Research Program
  2. Education and Information
Service Areas

Self-reported

National

The LFA is comprised of a nationwide network of nearly 300 chapters, branches, offices, support groups and community representatives serving 32 states.

ruling year

1978

Principal Officer since 2002

Self-reported

Ms. Sandra Raymond

Keywords

Self-reported

lupus, SLE, medical research, patient education, professional education, advoacy

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EIN

43-1131436

 Number

3263593805

Physical Address

2000 L Street NW Ste. 410

Washington, DC 20036 4952

Also Known As

LFA

Contact

Cause Area (NTEE Code)

Single Organization Support (G11)

Single Organization Support (H11)

IRS Filing Requirement

This organization is required to file an IRS Form 990 or 990-EZ.

Programs + Results

How does this organization make a difference?

Overview

Self-reported by organization

The Lupus Foundation of America (LFA) is leading efforts to create momentum in the field by establishing new research initiatives and implementing creative solutions to address the tough issues related to advancing the science and medicine of lupus. These initiatives include the Lupus Research Registry provided through the LFA Center for Clinical Trials Education (LFA CCTE) web site, for individuals interested in participating in future lupus clinical trials, and a Web-based service (LFA POINT program) through which physicians and clinical investigators receive uniform training on instruments used to assess disease activity in clinical studies and medical practice. The LFA is also partnering with key stakeholders from industry, government, and the scientific community to evaluate data from previous lupus clinical trials to improve the design of future studies.  We will continue to urge the federal government and industry to increase investment in lupus research, develop a full arsenal of treatments, increase public awareness, and educate our health professionals so lupus may be diagnosed and treated early.

Programs

Self-reported by organization

What are the organization's current programs, how do they measure success, and who do the programs serve?

Program 1

Bringing Down the Barriers - National Research Program

Research - The LFA's National Research Program is dedicated to Bringing Down the Barriers that have obstructed the forward progress of basic biomedical, clinical,  epidemiological, behavioral and translational research on Lupus.

Category

Medical Research

Population(s) Served

General Public/Unspecified

Budget

$1,898,659.00

Program 2

Education and Information

The LFA Education and Information program provides people with lupus and their families support, services and hope by disseminating the latest information about living and coping with lupus.  The aim of this program is to improve the diagnosis and treatment of lupus by translating medical findings into medically sound information and programs for people affected by lupus as well as the physicians and other health professionals who care for people with lupus.   LFA’s public awareness initiatives seek to increase support for lupus by raising awareness and educating the public about the impact of the disease.

Category

Diseases, Disorders & Medical Disciplines

Population(s) Served

Adults

Budget

$4,771,000.00

Service Areas

Self-reported

National

The LFA is comprised of a nationwide network of nearly 300 chapters, branches, offices, support groups and community representatives serving 32 states.

Accreditations

Better Business Bureau Wise Giving Alliance

External Reviews

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Financials

Financial information is an important part of gauging the short- and long-term health of the organization.

The Lupus Foundation of America Inc
Fiscal year: Oct 01-Sep 30
Yes, financials were audited by an independent accountant.

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Operations

The people, governance practices, and partners that make the organization tick.

Lupus Foundation of America, Inc.

Leadership

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Principal Officer

Ms. Sandra Raymond

BIO

Sandra C. Raymond was named LFA President & CEO in January 2002.  She formerly served as the founding CEO of the National Osteoporosis Foundation. As a women's health advocate, Ms. Raymond is bringing national attention and resources to a significant women's health issue that is poorly understood by the public, health professionals and policy makers. She is providing strong leadership for the LFA to address the urgent need to increase the federal and private investment in lupus research, expand public and professional education on lupus, and develop constructive public policies aimed at assisting people with lupus and their families. Ms. Raymond also is interested in galvanizing an international effort on behalf of lupus research and education.

STATEMENT FROM THE Principal Officer

"This is an exciting time for people with lupus, their families.  We have seen historic progress in recent years, and helped lay the foundation for a new paradigm in lupus that includes increased awareness and understanding of lupus, greater investment in lupus research, and the development of new, effective, safer, and more tolerable treatments.  Accelerating medical research on lupus and engaging all relative public and private sources of support in this effort are among the LFA’s highest priorities. The LFA is aggressively conducting outreach efforts to increase public understanding of lupus through national awareness campaigns, media outreach, and online and social marketing. We are the leading voice for people with lupus advocating for expanded investment in research and education on Capitol Hill and in state capitols across the country.  Our goal is to ensure that all people affected by lupus have access to the information and services they need.  We thank our supporters, volunteers, and lupus advocates across the nation who band together to help support our efforts on behalf of all those living with lupus."

Governance

BOARD CHAIR

Ms. Cindy Coney

Monarch Training & Consulting

Term: July 2010 - July 2012

BOARD LEADERSHIP PRACTICES

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RESPONSE NOT PROVIDED

BOARD ORIENTATION & EDUCATION

Does the board conduct a formal orientation for new board members and require all board members to sign a written agreement regarding their roles, responsibilities, and expectations?


RESPONSE NOT PROVIDED

CEO OVERSIGHT

Has the board conducted a formal, written assessment of the chief executive within the past year?


RESPONSE NOT PROVIDED

ETHICS & TRANSPARENCY

Have the board and senior staff reviewed the conflict-of-interest policy and completed and signed disclosure statements in the past year?


RESPONSE NOT PROVIDED

BOARD COMPOSITION

Does the board ensure an inclusive board member recruitment process that results in diversity of thought and leadership?


RESPONSE NOT PROVIDED

BOARD PERFORMANCE

Has the board conducted a formal, written self-assessment of its performance within the past three years?