Autoimmune Conditions Resource Collection: Comprehensive Tools and References
Navigating autoimmune disease requires reliable resources for education, support, testing, and provider access. The autoimmune disease ecosystem includes hundreds of organizations, apps, and educational platforms — but identifying evidence-based, trustworthy sources among the volume requires careful curation. The American Autoimmune Related Diseases Association (AARDA) provides comprehensive resource directories that serve as starting points.
This curated collection organizes the most valuable autoimmune disease resources by category, helping you quickly find reliable information and tools for every aspect of your autoimmune journey.
Disease-Specific Foundations and Organizations
Lupus Foundation of America (lupus.org): Comprehensive lupus education, support groups, clinical trial finder, and the “Lupus Through My Lens” peer storytelling program. Their “Breaking Through Lupus” research initiative funds cutting-edge lupus research.
National Multiple Sclerosis Society (nationalmssociety.org): Extensive MS education, wellness programs, financial assistance, and the MS Navigator service that connects patients with resources. Their Research Programs fund over $30 million annually in MS research.
Crohn’s & Colitis Foundation (crohnscolitisfoundation.org): IBD education, the IBD Help Center, Camp Oasis for children with IBD, and the “Creative Connections” peer support program. Their IBD research programs fund over $20 million annually.
Arthritis Foundation (arthritis.org): Arthritis education, the Arthritis Self-Management Program, aquatic exercise programs, and the JA (juvenile arthritis) camp programs. Their “Arthritis Foundation Exercise Program” is evidence-based and widely available.
American Autoimmune Related Diseases Association (aarda.org): National autoimmune disease advocacy, research funding, and the Autoimmune Disease Research Coalition. Provides cross-disease autoimmune information rather than focusing on a single condition.
Testing and Diagnostic Resources
Autoimmune blood panels: Standard autoimmune testing includes ANA, RF, anti-CCP, ESR, CRP, complement levels, and disease-specific antibodies. Quest Diagnostics and LabCorp provide comprehensive autoimmune panels through physician orders.
Functional medicine testing: GI-MAP (stool testing for gut microbiome), MRT (mediator release test for food sensitivities), and DUTCH (hormone metabolites) provide additional functional data relevant to autoimmune management.
Disease activity monitoring tools: MyRA (lupus activity tracking), MS-specific apps like MS Buddy and MS Relapse Tracker, and IBD-specific apps like myIBD provide disease-specific tracking capabilities.
Research databases: ClinicalTrials.gov lists active autoimmune studies seeking participants. The NIH’s Autoimmune Disease Research Center provides information about ongoing research and available studies.
Mobile Applications for Autoimmune Management
MyTherapy: Comprehensive medication tracking with reminders, symptom logging, and health reports. Integrates with pharmacies for refill reminders. Free with premium features.
Cureous: Autoimmune disease management app with flare tracking, medication management, and community features. Designed specifically for autoimmune patients.
MyRA: Lupus-specific activity tracking tool developed by researchers. Tracks symptoms, medications, and disease activity using validated outcome measures.
Ovia Health: Cycle and health tracking with autoimmune-relevant features. Particularly useful for women managing autoimmune conditions alongside reproductive health.
Headspace/Calm: Meditation and stress management apps with specific programs for chronic illness, pain management, and sleep — all relevant to autoimmune health.
Professional Directories and Provider Finders
American College of Rheumatology “Find a Rheumatologist” (rheumatology.org): Searchable directory of board-certified rheumatologists. Filter by location, subspecialty interests, and practice type.
American Academy of Allergy, Asthma & Immunology “Find an Allergist/Immunologist” (aaaai.org): Directory of clinical immunologists who manage complex autoimmune conditions.
Institute for Functional Medicine (ifm.org): IFM Certified Practitioner directory for providers trained in root-cause autoimmune approaches.
Autoimmune Registry (autoimmuneregistry.org): Database of autoimmune-literate practitioners including rheumatologists, functional medicine practitioners, and integrative medicine specialists.
Peer Support Communities
r/AutoImmuneDisease: Reddit community for general autoimmune disease discussion, support, and shared experiences. Active moderation and evidence-based community culture.
r/RheumatoidArthritis: Reddit community specifically for RA patients discussing treatment, lifestyle, and peer support.
r/CrohnsDisease: Reddit community for IBD patients with discussions of treatment, surgery, diet, and daily living.
The Mighty (themighty.com): Digital health community with extensive autoimmune disease content, personal stories, and peer connections across all autoimmune conditions.
Autoimmune Wellness (autoimmunewellness.com): Educational platform and community focused on the Autoimmune Protocol (AIP) diet and lifestyle approach.
Books and Educational Materials
“The Autoimmune Solution” by Amy Myers, MD: Comprehensive overview of autoimmune disease causes and a 5-step protocol for prevention and treatment. Accessible for general readers.
“The Wahls Protocol” by Terry Wahls, MD: Evidence-based approach to autoimmune management through diet, lifestyle, and functional medicine. Particularly relevant for MS but applicable to other autoimmune conditions.
“Breaking the Vicious Cycle” by Elaine Gottschall: Pioneering book on the Specific Carbohydrate Diet (SCD) for IBD, with scientific rationale and practical guidance.
“Medical Medium” by Anthony William: Popular but controversial — claims about autoimmune causes are not supported by conventional medical evidence. Read critically and discuss with your provider.
Frequently Asked Questions
Which autoimmune foundation should I contact first?
Contact the foundation specific to your diagnosis: Lupus Foundation for lupus, National MS Society for MS, Crohn’s & Colitis Foundation for IBD, Arthritis Foundation for arthritis. If you have an undifferentiated autoimmune condition or multiple autoimmune diseases, AARDA provides cross-disease resources and support.
Are autoimmune disease apps reliable?
Quality varies significantly. Prioritize apps developed in partnership with medical institutions or validated through clinical research. Medication tracking and symptom logging apps are generally reliable. Apps claiming to “cure” or “reverse” autoimmune disease without medical evidence should be viewed skeptically.
How do I find clinical trials for my autoimmune condition?
Search ClinicalTrials.gov using your disease name and location. Contact your disease-specific foundation’s research department. Ask your rheumatologist about clinical trial opportunities at your treatment center. Academic medical centers are most likely to offer cutting-edge trial access.
Are there financial assistance programs for autoimmune medications?
Yes. Most biologic manufacturers offer patient assistance programs (PAPs) that provide free or reduced-cost medications for qualifying patients. The HealthWell Foundation, Patient Access Network Foundation, and disease-specific foundations offer co-pay assistance. Hospital charity care programs cover uninsured patients.
How do I evaluate autoimmune health information online?
Prioritize information from established medical organizations (ACR, NIH, disease-specific foundations) and peer-reviewed journals. Be skeptical of “miracle cure” claims, products sold through multi-level marketing, and advice from unlicensed practitioners. Always discuss new treatments or supplements with your healthcare provider.