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AARDA Facts

AARDA Facts


ORGANIZATIONAL FACTS

  • The American Autoimmune Related Diseases Association, Inc. (AARDA), was founded in 1991. AARDA’s mission is the eradication of autoimmune diseases and the alleviation of the suffering and socioeconomic impact of autoimmunity through initiating, fostering, and facilitating collaboration in research, education, advocacy and patient services in an effective, ethical, and efficient manner.
  • AARDA is a national 501(c)(3) nonprofit health agency that adheres to the standards of the National Charities Information Bureau and the Better Business Bureau, being a BBB Accredited Charity. AARDA is a certified member of the National Health Council (NHC) and meets all NHC standards and guidelines. It has been rated a Four Star Charity by Charity Navigator.
  • AARDA is the only national organization dedicated to addressing the problem of autoimmunity, the major cause of chronic disease.
  • AARDA voices the needs and concerns of citizens affected with autoimmune diseases to state and federal governments, through its Advocacy and Government Relations Program.
  • AARDA provides patients with information and referrals through its national toll-free patient information line, 800-598-4668. AARDA also provides information on its Web site, www.aarda.org.
  • AARDA’s national headquarters is located in the Greater Detroit area.
  • AARDA’s main sources of funding are public donations, grants, fundraising events, and bequests.
  • AARDA is certified by the National Health Council as meeting all of their guidelines for Voluntary Health Agency Good Operating practices, and proudly carries the seal of the Better Business Bureau, being a BBB Accredited Charity.
  • Administrative costs represent only 9 percent of the total public support.
  • AARDA is a member in good standing of the International Alliance of Patient Organizations.

OUR PROGRAMS

Research

  • Although autoimmunity is the #2 cause of chronic illness, the level of basic autoimmune research funding is below 3 percent of the National Institutes of Health budget. AARDA supports basic autoimmune research, which will have impact on multiple autoimmune diseases by identifying the mechanisms that initiate the autoimmune response which triggers all autoimmune diseases. Autoimmunity as a factor in chronic illness has just begun to be explored as it is being seen as a factor in many serious conditions, such as cardiovascular disease, which has only recently been recognized.
  • The whole arena of autoimmune research and its impact on autoimmune diseases is in its infancy. In the past decade, 92 biotechnology companies have formed around autoimmunity; and 27 of the major pharmaceutical companies have some drug in development for an autoimmune disease.
  • We have only begun to discover the role that autoimmunity plays in many chronic illnesses. As evidence of this new knowledge, the NIH established Centers of Excellence in autoimmune diseases. AARDA provides funds for peer reviewed basic autoimmune research and donordirected specific disease research/fellowships.
  • AARDA initiated the founding of the Center for Autoimmune Disease Research at Johns Hopkins University Medical Center and provided a major grant for start-up funding. AARDA continues its support of the Center’s research program. We support outstanding research at several major research institutes.

Scientific Information Exchange

  • Modern medicine is organized on the basis of the anatomy of disease, or where the disease occurs. There is no specialty that focuses on autoimmunity. Each disease is treated by the medical specialty that covers the particular anatomical part which is involved in a disease. Therefore, neurologists treat nervous system disorders; rheumatologists, rheumatic diseases; dermatologists, dermatological disorders; etc.
  • In the area of autoimmune diseases, which cross all of these specialties, it becomes clear that there must be cross-fertilization of scientific information in order to develop effective treatments that will treat the cause of these diseases, not just the symptoms. It is therefore necessary to conduct multidisciplinary scientific symposia to facilitate this vital cross-fertilization of research information. The American Autoimmune Related Diseases Association (AARDA) is the only national organization or association that is positioned to do this because of its broad focus on autoimmunity as the underlying cause of over 100 chronic diseases.
  • AARDA has successfully sponsored national and international scientific symposia and colloquia as well as cosponsored several scientific meetings with the National Institutes of Health, American College of Rheumatology, and Clinical Immunology Society.
  • AARDA sponsors an “Autoimmunity Day” program. The program is based on the concept of bringing together researchers from many different disciplines who are involved in autoimmune research. AARDA has sponsored ten autoimmunity days at Johns Hopkins University. The program utilizes speakers from the host institutions and several outstanding speakers from other institutions involved in autoimmune research. The Autoimmunity Day program has been very well accepted and has grown in size each year. As a result of these programs, several researchers from different departments are now working together on research projects; and two laboratories have actually joined together in their research projects. The program in 2009 was Web cast to a wide audience of researchers and other interested persons.
  • AARDA sponsors workshops on various topics at the International Congress on Autoimmunity, an event held every three years. Previous congresses have been held in Budapest, Tel Aviv, Geneva, and Sorrento .

Advocacy

  • Advocacy for increasing government funding for autoimmune research is an important program area for AARDA. Although autoimmunity is the #2 cause of chronic illness, the level of basic autoimmune research funding is below 3 percent of the National Institutes of Health’s budget. At AARDA’s urging, in 1998 Congress called for the NIH to form an Autoimmune Diseases Coordinating Committee under the Institute. AARDA representatives serve on this committee. Recently AARDA was successful in raising the level of autoimmune research by $150 million over the next five years. Additionally, AARDA spearheaded the advocacy effort and was successful in having legislative language included in the Children’s Health Act that required NIH to develop a national strategic plan for autoimmune disease research. In 2003 NIH presented the plan to Congress, and AARDA is leading the advocacy efforts to provide full funding of $450 million to initiate the plan. AARDA is currently involved in advocating for passage of the HR 2084, the Prevention, Awareness, and Research of Autoimmune Diseases (PARAiD) Act, which was introduced by Patrick Kennedy in 2009.
  • AARDA initiated, supports, and facilitates the National Coalition of Autoimmune Patient Groups (NCAPG), a coalition of 30 national voluntary health agencies which represent specific autoimmune diseases. AARDA coordinates advocacy efforts of these groups on behalf of basic autoimmune research funding.
  • AARDA sponsors a Congressional Briefing annually on Autoimmune Diseases and the impact of these diseases on society.

Patient Education

  • Studies have shown that patients who understand their illnesses follow their treatment plans better than patients who are uninformed about their illnesses. Also, they experience less stress, which is a known contributor to worsening autoimmune diseases. Thus, good patient education can result in better treatment management, reduced health care costs, and a higher level of patient involvement in health care decisions.

AARDA’s efforts in the area of patient education are vital to persons with autoimmune diseases. Not every autoimmune disease has its own national health agency. Many of those patients are referred to AARDA by the National Institutes of Health and the National Organization for Rare Disorders, as well as other organizations. Currently AARDA averages over 400,000 inquiries per year and has developed over 80 patient education information pamphlets.

Physician Education

  • AARDA’s efforts in the area of physician education are very important because most autoimmune diseases are difficult to diagnose and treatment can be complicated, as many autoimmune diseases present with multifaceted involvement. A survey conducted by AARDA found that the average patient diagnosed with a serious autoimmune disease had seen over four doctors over a four-year period before a correct diagnosis was made. Physicians have been trained to be specialists rather than generalists. General practitioners have little training in autoimmunity, yet they usually are the first physicians that patients see. In some autoimmune diseases, the window of opportunity to treat aggressively the serious manifestation of an autoimmune disease is lost before the patient is seen by a specialist. Major organs are seriously damaged before appropriate treatment begins.

Public Education/Awareness

  • Although over 50 million Americans have at least one autoimmune disease, the public does not understand that these diseases have the same cause and that they run in families. A major problem and cost factor of these diseases is the fact that they are misdiagnosed or not diagnosed early in the disease process when serious and costly complications could be prevented. The history of autoimmune disease within a family is rarely part of a medical history questionnaire; yet this information is what would make a physician suspect the possibility of an autoimmune disease, and the patients cannot offer the information because they are generally unaware of the connection among the different chronic illnesses occurring in their families. The public is also unaware of the common factors in diagnosis and treatment of autoimmune diseases.
  • AARDA has launched a National Alliance for Autoimmune Awareness to implement “What Every American Needs to Know” public awareness campaign. Working in collaboration with the Alliance are public and private institutes and organizations including five National Institutes of Health (NIAMS, NIAID, NHLBI, NIEHS, and OWH), Department of Health and Human Services, Johns Hopkins University Autoimmune Diseases Research Center, and the National Coalition of Autoimmune Patient Groups.

 

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