Need for this disease focus
There are well over 100 diseases that are autoimmune and/or autoinflammatory, and these diseases often present with symptoms that include fatigue, fevers, brain fog, tissue pain, and a general feeling of being unwell. However, only a couple dozen of those autoimmune/autoinflammatory diseases also include inflammatory induced arthritis as a major disease component. By bringing focus to this specific subset of diseases, including what is similar and different among them, we will help to expedite early detection, referrals, diagnosis, and proper treatments.
It can also help in the following ways:
Our internal team at IFAA is comprised of patients living with these diseases who also have extensive experience in business, project management, education, and research. We use our own disease understanding, in addition to advice from patient volunteers and the disease community, to help us identify the most pressing issues that need to be solved. Once we develop a project and raise the funding necessary to address the problem, we enlist the help of other patient advocates, nonprofits, advisors, and subcontractors (called the Global Network philosophy) and go to work.
Increase awareness and understanding about symptoms, disease impact on relationships and lifestyle, the genetic + environmental influences responsible for triggering these diseases, and the serious complications that can arise when not managed early and effectively.
Expedited detection, referrals, diagnosis, and best therapies. Too many patients wait months, even years, before they are referred to a rheumatologist or other specialist trained to diagnose them. Even then, these disease can take time to develop symptoms characteristic of just one disease, making diagnosis difficult. Furthermore, some patients overlap in diseases, develop dual diagnoses and/or comorbidities - which get more complicated to treat the longer they go without proper therapy. Advanced education will expedite the path to better disease management and lessened potential disability, resulting in lower healthcare costs and a better quality of life for those affected.
Research that focuses on the individual patient, rather than based on clinical trials that only test efficacy in patients who fit a 'typical' patient profile. Since most patients with these diseases are unique in presentation and disease progression, and many have multiple, overlapping diagnoses and/or comorbidities, research must start to focus on the 'atypical' patient. Current treatments that may not work for an 'atypical' patient, including those with dual diagnosis or comborbidities, contribute to higher costs to patients who may fail many treatments before finding the one that works best, and to both the patient and healthcare system long term if the result of delay in proper treatment is disease complications and/or disability.
IFAA is not like any other nonprofit. We are patients who use our background experience in business development, project management, education, and research - in addition to collaboration with other nonprofits, consultants, advisors, and subcontractors - to identify and solve community problems. From the way we have created our unique organizational model that puts the patient at the heart of all we do to implementing projects that are changing the landscape of healthcare, we are leading the way for 'next generation nonprofits'.
There are already nonprofits that focus on arthritis, those that advocate for all autoimmune and autoinflammatory diseases, and those that are disease-specific. Most have awareness and education programs, support research for a cure, and advocate for public policy issues that affect the patient population. So why IFAA?
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