Why Autoinflammatory Awareness Matters

The official International Autoinflammatory Awareness Month video was created by Will & Chris Kinchlea, and autoinflammatory patient advocates, and Joe Long from Canada to help increase awareness for these diseases. The official video with Spanish Subtitles is at this link.

Please help us to “Shine a Light on Autoinflammatory Diseases” this year!

Autoinflammatory diseases are rare diseases that are often caused by genetic mutations that affect the innate immune system. Most of these diseases affect patients throughout their entire life, but a few may have onset in adulthood. Patients with autoinflammatory diseases (also known as periodic fever syndromes, or disorders of immune dysregluation) suffer from systemic inflammation, including fevers, rashes, pain, and organ involvement from head to toe with recurring, or chronic symptoms. With earlier diagnosis, and the proper treatment, many patients can have improved quality of life, and less complications or damage from these complex diseases.

The term “autoinflammatory” was used in 1999 to describe these rare diseases that were not autoimmune, that genetic causes were starting to be discovered by researchers. The innate immune system was being discovered around this time, so these terms are quite new, and understanding, and classification of these rare diseases is increasing, but more research into the causes, and best treatments is needed.

Rare autoinflammatory disease research to better understand immune dysregluation, and the over-production of various cytokines, including cytokine storm syndromes has helped with the care and treatment of more common diseases.

Research and treatments used in autoinflammatory diseases have been utilized, and experts on autoinflammatory diseases have been recruited worldwide in 2020 to help to understand the cytokine storm in COVID-19, and how to best treat it. Research in these rare autoinflammatory diseases has been helping to benefit the efforts to save, and heal more patients with COVID-19, and this research will benefit even more diseases in the future.

Supporting Autoinflammatory Awareness Month can benefit us all, and can make an impact beyond these ultra rare diseases. We welcome you to get involved! Thank you.

Since 2015, August has been internationally recognized as Autoinflammatory Awareness Month. We welcome all to join in raising awareness during the month, or when they can to help to promote improved care, research and treatments for these rare diseases.