Patient Resources

Finding a Diagnosis/Genetic Testing – Resources you need to help get a diagnosis. Includes the diagnostic chart, testing resources, and more.

Symptom Logs – Tips for keeping a symptom log for your doctor and what others use for recording their symptoms.

Education – Fever syndrome educational resources for patients, caregivers, medical professionals, and family and friends of patients.

Tips and Resources for Patients (Adults and Children) on Biological Medications – Order the injection tips book and see helpful videos here for kids and adults using injection biological medications such as anakinra.

 
Eurofever Classification Criteria -A helpful tool that can be used as part of the diagnostic process when trying to determine what periodic fever syndromes to consider. After answering several questions about the patient’s symptoms, age of onset, and ethnicity, it calculates a score determining the risk that patient may have CAPS, TRAPS, MKD (HIDS and MA), and/or FMF.

School Resources – Find tips for setting up a 504 plan for U.S. school kids, setting up an Individual Healthcare Plan for U.K. kids, easy to understand information to help educate friends, family, and teachers, and more here.

 
Support Groups – Online autoinflammatory support group links.

Clinical Trials – Find studies around the world involving autoinflammatory diseases.

NIH – Visitor and travel information for patients participating in National Institutes of Health studies.

Military Families – For families in the military, or have Tricare (active duty), the Pediatric Rheumatology department at the Walter Reed National Military Medical Center near the NIH in Maryland specializes in autoinflammatory diseases/periodic fever syndromes.

Other Resources – Find more helpful resources here, such as school 504 plan information.

 


The Autoinflammatory Alliance is a nonprofit organization dedicated to helping those with autoinflammatory diseases.

Donate now to help with awareness, education, and research for these rare diseases.