These are just a few suggestions–feel free to do what you want to do to increase awareness and understanding during Autoinflammatory Awareness Month!
Please watch our official International Autoinflammatory Awareness Month video and share it widely to raise awareness, understanding and hope!
Watch the programs with expert doctors and patient advocates from various parts of the world, and patient organizations speaking on autoinflammatory diseases from our 2021 patient programs.
Visit our events page to find out about all the programs and gatherings at major landmarks being lit up orange for International Autoinflammatory Awareness Month, and find out how you can get involved wherever you are in the world.
Our free, online program for patients, caregivers and medical professionals will be on Saturday, August 27, 2022 and will have translation and will be recorded. More details and registration is coming soon!
Link to to watch the August 7th patient program is here, with closed captioning.
Link to watch the August 28th patient program is here, with closed captioning.
We have translated mp3 audio recordings in French, Spanish, Ukrainian, and Russian.
Enjoy these short videos featuring the building lightings around the world for International Autoinflammatory Awareness Month from 2021 for inspiration:
Kansas City, MO at Union Station, and Children’s Mercy hospital.
Building lightings in various locations in Barcelona, Spain and elsewhere in Spain.
Video from the “Shine a Light for Autoinflammatory Diseases” campaign submitted by patients and medical professionals worldwide, sharing their messages to increase awareness and support to others globally.
The “We are More” video features patients doing things that they love, and can do, thanks to being diagnosed and on beneficial treatments, and is very inspiring.
If you have a just few minutes to raise awareness:
Update your social media frame to show your support for International Autoinflammatory Awareness Month. (Go to our Downloads page to learn more, and find other graphics that you can use on social media too.
-Post anything you find interesting on our Facebook or Twitter Autoinflammatory Awareness Month pages to raise awareness to your social circles, and use the #shine4autoinflammatory hashtag, or ad some others listed below.
🎥 Casting call! 🎬 Shine your💡on autoinflammatory diseases for Autoinflammatory Awareness Month by submitting a short video (30 seconds or less) sharing what you have found helpful to better cope with you or your child’s disease.
We all loved last year’s video highlighting our patients! All submissions will be included in a slideshow to be shared in our program on August 27th in celebration of this year’s Autoinflammatory Awareness Month.
Deadline for all submissions is August 7, 2022. Please upload your videos to: https://www.dropbox.com/request/rGwJqfgz1w0eOQcj5QPW?fbclid=IwAR2IepbjO_3AH6dyK8P5NEZ0B-oNjiT2XelzZ4z6qmFvNG27Lom6Guc-ZVc
We can’t wait to see your resilience! 🔥
–Download and print out some of our awareness graphics and take a photo with glow, candles or lights and your message in a photo, or up to 10 seconds of video and post it onto social media and upload your photos or videos to our secure dropbox by August 15th so we can put them in our awareness month social media and our closing ceremony on August 27. Please use the #shine4autoinflammatory hashtag too.
Hashtags to use:
#hope4SAID (SAID means “systemic autoinflammatory disease”)
Or come up with your own! Please share it with us too-it is fun to see the creativity in our patient community.
You can request buildings to be lit up orange in August for International Autoinflammatory Awareness month in your area. Here is a template example for an email or letter. On our events page, you can see where buildings will be lit in the world, especially in Valencia, Spain this year.
-Send us a message in our Contact Us page to sign up for updates for the month.
Make sure to also show your support your favorite autoinflammatory and/or rare disease charities!
-Visit their site, and social media sites to get involved, and learn more about their initiatives.
If you have less than an hour:
-Contact your elected officials and share with them about the need to support research for rare autoinflammatory diseases, improve access to treatments, and genetic testing and share your story about life with an autoinflammatory disease (or that of a loved one.)
For more suggestions on how to reach out to elected officials in the US, visit this page.
-Reach out to a friend or family member that has an autoinflammatory disease, and ask them about it, and what they would like you to know about life with an autoinflammatory disease.
More than an hour:
-Write, or make some art or other item that helps you to express life with an autoinflammatory disease, and share it with friends, family or online.
Learn more about autoinflammatory diseases by visiting these sites:
–PRINTO introduction to autoinflammatory diseases, and disease-specific information for patients and caregivers (available in many languages.)
-International Society of Systemic Auto-inflammatory Diseases (ISSAID) resources for medical professionals, and also a growing list of resources for patients and caregivers here.
–Autoinflammatory Boot Camp video series on youtube, taken from the 2nd NIH-WRNMMC Autoinflammatatory and Immunedysregulatory Symposium from 2019
–Periodicfevers.com is a family-friendly site with info, and even online storybooks for kids.
–saidsupport.org “Where to Start” for learning about autoinflammatory diseases (periodic fever syndromes) and also read about how these diseases are different from autoimmune diseases here.
–autoinflammatorydiseases.org also features talks from the 2018 Boston Children’s Autoinflammatory Disease Lifestyle and Wellness Patient workshop.
–autoinflammatory-search.org Medical search database to compare autoinflammatory diseases (with rash images-medically edited and geared to those with medical terminology).
-Attend one of the virtual events online in honor of Autoinflammatory Awareness Month.
-If you have a favorite autoinflammatory disease charity, and want to make a donation or do a fundraiser during Autoinflammatory Awareness Month, that would be greatly appreciated!
-Visit our friends at The Flying Lifeguards on Facebook to share some of their adorable graphics and memes, and awareness graphics on social media that are dedicated to Autoinflammatory Disease Awareness.