AARDA's Programs and Services Make a Difference
AARDA’s programs and services are designed to maximize information development, collection, analysis, and sharing. It is our belief that the more information researchers, physicians, elected officials, and patients have the closer we are to finding safer, more effective treatments – and in some instances a cure.
Conferences & Seminars
AARDA sponsors physician conferences and symposia to encourage collaboration in research and cross fertilization of treatment approaches, scientific knowledge, and pharmaceutical advancements. AARDA also sponsors public seminars for patients and their families.
National Awareness Campaign
AARDA’s national awareness campaign combats a severe lack of public information regarding autoimmune diseases. This lack of information is a significant factor in an unnecessarily high death rate attributed to misdiagnosis and delayed diagnosis. It is also a significant factor in high health care costs.
Most autoimmune-related research focuses on specific diseases rather than general autoimmunity. AARDA funds collaborative research into autoimmunity as the underlying factor of many serious chronic illnesses.
AARDA publishes a comprehensive quarterly national newsletter, InFocus. Subscribe today and keep up to date on autoimmune disease research, advocacy, and events.
- AARDA supports basic autoimmune research. This research impacts multiple autoimmune diseases by identifying the mechanisms that initiate the autoimmune response. The relationship between autoimmunity and chronic illness has only just begun to be explored. Autoimmunity is considered a factor in many serious conditions, such as cardiovascular disease.
- Basic autoimmune research refers to research that explores autoimmunity as a whole, rather than a specific autoimmune disease. Basic research can also be research into a specific disease, as long as the goal of the research advances the study of autoimmunity in general.
- AARDA has provided over $1,000,000 to peer reviewed basic autoimmune research and donor-directed specific disease research.
- Although autoimmunity is the #2 cause of chronic illness, the level of basic autoimmune research funding is less than 3 percent of the National Institutes of Health budget.
- We have only begun to discover the role that autoimmunity plays in many chronic illnesses. In recognition of the importance of this work, the NIH established Autoimmunity Centers of Excellence.
- AARDA initiated the founding of the Autoimmune Disease Research Center at Johns Hopkins University Medical Center by providing a major grant for start-up funding. AARDA continues its support of the Center’s research program.
Modern medicine is organized on the basis of the anatomy of disease, or specific disease location. There is no specialty that focuses on autoimmunity. Each disease is treated by the medical specialty that covers the particular anatomical part affected. 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—there must be cross-fertilization of scientific information to develop effective treatments for the cause of these diseases, not just the symptoms. Multidisciplinary scientific symposia are necessary to facilitate this vital cross-fertilization of research information. Because of its broad focus on autoimmunity, AARDA is the only national organization positioned to facilitate such symposia.
- AARDA organizes and funds one or two Noel R. Rose Scientific Colloquiums per year. The results of each meeting have been published.
- Dr. Rose’s pioneering research was instrumental in establishing the concept of autoimmune disease. It helped immunologists understand that the immune system is capable of directing a response against healthy tissues and organs.
- AARDA has successfully sponsored national and international scientific symposia and colloquia, as well as cosponsored several scientific meetings with
- The National Institutes of Health: one of the world’s foremost medical research centers
- American College of Rheumatology: committed to improving the care of patients with rheumatic disease and advancing the rheumatology subspecialty
- Clinical Immunology Society: devoted to fostering developments in the science and practice of clinical immunology
- AARDA sponsors an Autoimmunity Day. This program is based on the concept of bringing together researchers from many different disciplines. Typically hosted at Johns Hopkins University, this program utilizes speakers from highly regarded institutions involved in autoimmune research. The Autoimmunity Day program has been very well received and has grown in size each year.
- As a result of this program, several researchers from different specialties are now working together on research projects, and two laboratories have joined together in their research projects.
- AARDA sponsors workshops on various topics at the International Congress on Autoimmunity, an event held every three years. Previous congresses have been held in, Tel Aviv, Geneva, Budapest, Sorrento, Porto, Ljubljana, Granada, and Nice.
- Advocacy for increasing government funding for autoimmune research is an important focus 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. AARDA representatives serve on this committee.
- AARDA has secured over $150 million for autoimmune research from the NIH in recent years.
- AARDA spearheaded the advocacy effort to include legislative language in the Children’s Health Act that required the NIH to develop a national strategic plan for autoimmune disease research. In 2003, the 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 initiated and continues to facilitate the National Coalition of Autoimmune Patient Groups (NCAPG), a coalition of national voluntary health agencies that represent specific autoimmune diseases. AARDA coordinates advocacy efforts of these groups on behalf of basic autoimmune research funding, health policy changes, and awareness.
- AARDA sponsors a Congressional Briefing or Autoimmune Summit each year on the impact autoimmunity has on patients’ standards of living, as well as the impact on the workforce, health care costs, and the economy.
- Studies have shown that patients who understand their illnesses follow treatment plans better than patients who are uninformed about their illnesses. Informed patients also experience less stress, which is a known contributor to worsening autoimmune disease symptoms. Good patient education can result in better treatment management, reduced health care costs, and a higher level of patient involvement in health care decisions.
- Not every autoimmune disease has its own dedicated resources in research, education, and support. Many patients of those diseases are referred to AARDA. AARDA averages over 400,000 inquiries per year and has developed over 80 pieces of patient education material.
- Most autoimmune diseases are difficult to diagnose. Treatment can be complicated, as many autoimmune diseases present with multifaceted involvement.
- Physicians have been trained to be specialists rather than generalists. General practitioners have little training in autoimmunity, yet they are usually the first physicians that patients see.
- A national survey conducted every five years by AARDA still shows that the average patient diagnosed with a serious autoimmune disease had seen almost four doctors over a five-year period before a correct diagnosis was made.
- In some autoimmune diseases, the window of opportunity to aggressively treat the serious manifestation of an autoimmune disease is lost before the patient is seen by a specialist. Major organs can be seriously damaged before appropriate treatment begins.
- 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.
- The history of autoimmune disease within a family is rarely part of a medical history questionnaire, yet this information is what would lead a physician to suspect the possibility of an autoimmune disease. Patients cannot offer this information because they are often unaware of the connection between different chronic illnesses occurring in their families.
- A major problem and cost factor of these diseases is the fact that they are misdiagnosed or not diagnosed early enough in the disease process when serious and costly complications could be prevented.
- The public is also unaware of the common factors in diagnosis and treatment of autoimmune diseases.