These are just a few suggestions–feel free to do what you want to do to increase awareness and understanding during Autoinflammatory Awareness Month!
If you have a just few minutes to raise awareness:
–Change your facebook frame to show your support for International Autoinflammatory Awareness Month. (Go to our Downloads page to find more facebook frame options from other sources too.)
-Post anything you find interesting on our Facebook or Twitter Autoinflammatory Awareness Month pages to raise awareness to your social circles.
-Send us a message in our Contact Us page to sign up for updates for the month.
-Download and print out some of our awareness graphics and take a photo, and post it onto social media.
-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.
Try to use the hashtags that have been associated with Autoinflammatory Awareness Month for the past few years, and you may find some inspiration in other posts with those hashtags. Hashtags we have had in use for the past few years include:
#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.
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.
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 a favorite autoinflammatory disease charity, and want to make a donation or do a fundraiser during Autoinflammatory Awareness Month, that would be greatly appreciated!