Resources

The American College of Rheumatology (ACR) provides a patient-focused section on its website that offers accessible evidence-based information about rheumatic diseases such as arthritis, lupus and gout. It includes educational materials that explain symptoms, treatment options and when to seek care from a rheumatologist. Patients can find downloadable fact sheets, videos and infographics—many available in Spanish—that simplify complex medical topics. The site also offers guidance on lifestyle adjustments and pain management strategies to help individuals live well with chronic conditions.

The Arthritis Foundation website offers a wide range of resources tailored to help patients understand and manage arthritis. It provides medically reviewed information on over 100 types of arthritis, including osteoarthritis, rheumatoid arthritis and juvenile arthritis. Patients can access fact sheets, treatment guides, and self-management tips to help navigate symptoms and improve quality of life. The site also features podcasts, webinars, and e-books that cover topics like nutrition, exercise and mental health. Support is available through the Arthritis Foundation Helpline, which connects users with trained staff who can assist with insurance questions, treatment options and emotional support. Overall, the site empowers patients to take control of their health and connect with a supportive community.

The Childhood Arthritis and Rheumatology Research Alliance (CARRA) website offers valuable resources for patients and families affected by pediatric rheumatic diseases. One of its key offerings is the Consensus Treatment Plans (CTPs), which provide standardized, evidence-informed treatment options for conditions like juvenile idiopathic arthritis, lupus nephritis and juvenile dermatomyositis. These plans help reduce variability in care and give families insight into commonly used treatments across the country. CARRA also maintains a large patient registry that supports research aimed at improving outcomes and developing better therapies. Families can participate in studies, access educational materials and stay informed about ongoing research efforts that directly impact pediatric care.

The Immune Deficiency Foundation (IDF) website offers comprehensive support for patients and families affected by primary immunodeficiency (PI). It provides educational resources about over 450 types of PI, including symptoms, diagnosis and treatment options like immunoglobulin replacement therapy. Patients can access the IDF Patient & Family Handbook, join support groups, attend webinars and connect one-on-one with others in the PI community. The site also features tools like a clinician finder, a self-assessment quiz and financial assistance information. Many materials are available in Spanish, and the foundation actively promotes plasma donation and advocacy efforts to improve care and awareness.

The Jeffrey Modell Foundation (JMF) is a global resource for patients and families affected by primary immunodeficiency (PI). It offers educational materials, regional toolkits and multilingual resources to help recognize symptoms and navigate diagnosis and treatment. A key feature is the “10 Warning Signs of PI,” which are available in over 50 languages to promote early detection worldwide. The site also connects users with expert immunologists, patient organizations and community events like KIDS DAY, which fosters connection and support among children with PI and their families. Through advocacy, research and awareness, JMF empowers patients to better understand their condition and access care.

The Lupus Foundation of America website provides a wide range of resources for patients living with lupus, focusing on education, support and empowerment. It offers tools like the Lupus Information Packet, symptom checklists and the “Could It Be Lupus?” quiz to help with early recognition and diagnosis. Patients can access support groups—both virtual and in-person—tailored to different communities, including youth, caregivers and Spanish-speaking individuals. The site also features programs like SELF (Strategies to Embrace Living with Lupus Fearlessly), which guides users in managing symptoms, stress and medications. Through its National Resource Center on Lupus, patients can explore articles, videos and downloadable materials created with input from medical experts and people living with lupus. Additionally, the LupusConnect™ online community and certified health educators offer emotional support and answers to personal health questions.

The Primary Immune Deficiency Treatment Consortium (PIDTC) website offers a rich collection of resources for patients and families affected by rare, inherited immune disorders. It connects users with trusted educational materials from organizations like the Immune Deficiency Foundation (IDF), including the Patient & Family Handbook and School Guide, which help families understand diagnosis, treatment and daily management. The site also links to international advocacy groups like IPOPI, and provides access to expert-reviewed articles from sources such as the Mayo Clinic and MedLinePlus. Patients can learn about Severe Combined Immunodeficiency (SCID), explore genetic and rare disease information through NIH’s GARD, and find guidance on participating in research ethically through the Office for Human Research Protections. Overall, PIDTC serves as a centralized hub for learning, support and connection within the primary immunodeficiency community.

The Rheumatology Research Foundation website primarily supports research, education and training in rheumatology, but it also offers meaningful resources for patients and families. While its main focus is funding and advancing scientific discovery, the site encourages patient engagement through initiatives like RheumLab, which shares the latest research in accessible formats. Patients can explore stories, learn about ongoing studies and discover how their experiences contribute to shaping future treatments. The Foundation also promotes awareness and advocacy, inviting patients to share their journeys and participate in community efforts that support rheumatic disease research and care.