To view, you will need to zoom in on this greatly. There are detailed instructions for how to print the chart at this download link.
These business-sized cards provide basic information about each condition. Patients use these to give to friends, family, doctors, nurses, teachers, and others as an easy way to simply explain theirs or their child’s condition. Cards are available for FMF, HIDS, CAPS, PFAPA, DIRA, CRMO, Blau, SURFS, and TRAPS. Click here to request SAID information cards. Be sure to include which disease(s) you need.
The CAPS Guidebook gives detailed information on the CAPS diseases. These include Familial Cold Autoinflammatory Syndrome (FCAS), Muckle-Wells Syndrome (MWS), and Neonatal-Onset Multisystem Inflammatory Disease (NOMID). Information on diagnosing, symptoms, and treatment options are covered. Click here to download the CAPS Guidebook in English. This is the link for the Spanish CAPS guidebook.
This is a book writen for children and families that have to deal with injectable medications for autoinflammatory diseases. It was written by the Autoinflammatory Alliance board, which includes a pediatric RN, an LPN, a kindergarten teacher, and a professional writer. Suggestions from parents of children with autoinflammatory diseases were also a big inspiration for some of the information in this book. Topics include: How to help young children to cope with their injections, traveling, distraction techniques, and more.
One of the key features of the book is an area to discuss various things related to their injection, so you can help develop a custom injection plan for your child. This plan will be used to fill in the page for promises (what the child will and will not do during the injection) and what awards they can earn for fulfilling these goals. This page, and the page with the chart to track progress towards earning the rewards are made of dry-erase paper. A set of reusable, vinyl cling star stickers, and a dry erase pen come with the book.
Click here to download a copy. It will be available in April 2014 in printed form, with the reusable chart and vinyl cling rewards chart stickers. We will have a link soon to request a copy of the printed book.
Pubmed.gov is a good place to start when researching your condition. Tips: Type in a condition, name of treatment medication, or a researcher’s name to find information you need.
Most autoinflammatory diseases are genetic. At this University of Utah Genetic Science Learning Center you can learn all about genetics, from the basics to the advanced.
Autoinflammation is an initiative of the Nijmegen Center for Immunodeficiency. Located in The Netherlands, this is one of the leading research centers in the world for autoinflammatory diseases . This website gives information that’s easy to understand about what autoinflammation is and about some of the different fever syndromes.