International Autoinflammatory Awareness Month was officially organized and launched in 2015 by the Autoinflammatory Alliance, along with the support of other organizations and our patient community worldwide, to improve understanding and advocate for these rare diseases. But coming together in the summer for autoinflammatory diseases started much earlier for patient picnics and gatherings around the world by various autoinflammatory disease organizations.
Most autoinflammatory diseases involve recurring fevers, with debilitating–or in some cases, quite chronic flares of systemic inflammation, including rashes, headaches, joint pain, abdominal pain, vomiting, diarrhea, red eyes and other systemic symptoms. In some cases, severe organ inflammation can occur, and there is a high risk for complications for some autoinflammatory diseases, if the inflammation is not controlled properly with targeted treatments.
When we talked to autoinflammatory patients globally, they really wanted to have an awareness month in the hottest time of the year (in the Northern Hemisphere), to represent fevers, and during the time of the year when they felt like they could get together at outdoor events, etc. In the Southern Hemisphere, this is a colder time of the year, which for some autoinflammatory diseases, cold can trigger flare ups of the fever and systemic inflammation.
It was also important to patients and caregivers to not have the month conflict with Rare Disease Day, and also for researchers to have a time of the year that did not conflict with many other medical conferences, which are back to back from September onwards, and also in the spring.
Many liked the idea of gatherings, picnics and other events. Some organizations were already hosting patient gatherings in the summer, and August was a month with very few other conflicts with awareness months or days for other related conditions. Also, in many languages, “August” starts with the same sound as “autoinflammatory,” so August was chosen.
To make it easy to get involved, and find a time that worked for many people, as well as that there are now so many classified autoinflammatory diseases, an entire month for awareness made more sense than a single date to honor them all. There are specific days for certain autoinflammatory diseases for awareness throughout the year, but August is a month for us all to come together in some way for autoinflammatory diseases in general.
This movement has grown, and August has been the month where a number of awareness events have been happening yearly for autoinflammatory diseases officially since 2015.
We hope that you will join us in raising awareness!