Tools & Support

Updated September 29, 2026

Learning the name of a disease is one thing. Figuring out where to find reliable information, someone who understands, or help navigating care is another. These resources are a starting point for patients and families.

New here? Start with The Basics. For help with a particular question, choose a section below.

Some services below are specific to the United States; the education resources can be useful wherever you live.

Diaries and practical checklists

AIDAI fever and symptom diary

Download the diary and learn how to use it.

Prepare for a visit

Keep your records, symptoms and questions together.

Daily life and transitions

Resources for school, work and growing independence.

Looking for an explanation or one of the recent talks? Browse the Articles & Guides library or clinical guidance and research.

Understand the condition

MedlinePlus: Autoinflammatory diseases — An introduction to symptoms, evaluation, and treatment from the National Library of Medicine’s health information website.
American College of Rheumatology patient information — Patient fact sheets on rheumatic diseases, including several autoinflammatory conditions. Many pages include a Spanish-language version.
PRINTO: Information on pediatric rheumatic diseases — Information for families in many languages, including Spanish. Choose your country or language to explore the condition guides.
Genetic and Rare Diseases Information Center (GARD) — NIH information about rare conditions, with Information Specialists who can help you locate resources, experts, and research studies.

Find support and community

Autoinflammatory Alliance — A useful first stop for disease-specific education, patient advocacy, and ways to connect with the autoinflammatory community.
Family Voices — Find a Family Voices affiliate or Family-to-Family Health Information Center for support navigating services for children and teens with special health care needs in the United States.
Arthritis Foundation: Children and families — Family connections, educational events, and practical information about life with pediatric rheumatic disease. Particularly relevant when arthritis is part of your child’s condition; check the requirements for individual programs.

Find care and understand genetic testing

GARD: Help finding rare-disease expertise — Use the “Ask a GARD Specialist” option for help locating information about disease experts and care resources.
Boston Children’s Hospital: Autoinflammatory Diseases Clinic — Information about evaluation and care for children with known or suspected autoinflammatory diseases. Look for the Autoinflammatory Diseases Clinic section on the services page.
National Society of Genetic Counselors directory — Search for in-person or telehealth genetic counseling in the United States and Canada. Ask your care team whether counseling would be useful, and confirm insurance coverage with the provider.

A directory listing does not tell you everything about a practice. Before scheduling, confirm the ages treated, referral requirements, insurance coverage, and experience with autoinflammatory disease.

School, daily life, and growing up

Got Transition — Checklists, questions, and family tools to help teens and young adults prepare for adult health care. Several resources are also available in Spanish.
Arthritis Foundation family resources — Practical material on school, emotional well-being, family relationships, and health coverage for children with arthritis and related conditions.

A few useful things to keep together

Fever and symptom diary — download AIDAI and learn how to use it.

A short symptom diary, dated photos of rashes or swelling, a current medication list, previous test results, and your main questions can make appointments easier. The Basics page explains what to record. For school or work, write down which parts of the day are difficult so you can discuss practical support with your care team.

Help with costs

NORD patient assistance programs may offer help with certain treatment, insurance, testing, travel, or caregiver expenses. Programs have their own eligibility rules, and funding and availability change; assistance is not guaranteed for every diagnosis.

Your clinic’s social worker or financial counselor may also be a useful starting point when costs are getting in the way of care.

Research opportunities

Search ClinicalTrials.gov for autoinflammatory disease studies. Try the specific disease name as well, and check recruitment status, age limits, location, and the study contact details. The search includes studies that may not currently be enrolling.

Before deciding whether to participate, discuss the study with your care team and ask the research team about visits, possible risks and benefits, travel, and costs. A study listing is not a treatment recommendation.

For clinicians and readers who want more detail

Explore the site’s clinical reading list and the International Society of Systemic Auto-Inflammatory Diseases (ISSAID) for professional education and research resources.

Resource list updated September 29, 2026. These links provide education and support and do not replace advice from your healthcare team.