Autoinflammatory Alliance

05/29/2026

Participate in important PFAPA genetic research from home! This NIH study is still in need of more PFAPA patients: All who have PFAPA, or those who had it in the past can apply!

The NIH Clinical Center is still seeking patients to participate in their PFAPA study from home. You or your child can submit a saliva sample for testing for their study to find the cause for this disease. (International patients welcome too.) Also, if you have PFAPA, and are getting your tonsils and/or adenoids removed, please contact them to have them properly prepared to ship for analysis. International patients are welcome. Contact Mary Bowes RN at 240-408-0970 or email [email protected]. Thank you. Please share this too!

05/25/2026

We honor all who have served in the Armed Forces and others in uniform, who have given the ultimate sacrifice this Memorial Day, and always. And we are thinking of their families as well. I am resharing our 2023 post and words below, as they are still relevant today.

We honor and reflect this Memorial Day on the sacrifice of those in the Armed Forces who have died in battle to restore freedom for others. No words can properly express our gratitude and the measure of the sacrifice for those who have been lost, and for their loved ones. Thank you.

05/23/2026

Hot off the presses this month: A comprehensive journal.article how to treat HA20 by experts, including some of the Autoinflammatory Alliance scientific advisors, Dr Schwartz and Dr Cetin-Gedek. Take this to your Doctors, and share widely if you have HA20, to help awareness and treatment. Thanks to all the expert doctors for this publication, and helpful flow chart for diagnosis and treatment too. 🧡

Li et al. present a comprehensive clinical framework for diagnosing and managing HA20, an immune dysregulation disease caused by loss-of-function TNFAIP3 v

05/12/2026

A special thanks to all nurses on International Nurse's Day! We thank you, and all healthcare professionals for all you do. ❤️

05/12/2026

As continues, we want to thank the 10,710 nurses who have earned Continuing Medical Education (CME) credit through NORD’s free rare disease courses.

At the front lines of care, nurses may be the first to recognize symptoms that can lead to a rare diagnosis. By dedicating your time to learning about these often-overlooked conditions, you are bringing new medical knowledge into real-world settings.

To nurses everywhere, thank you for your compassion, dedication, and commitment to lifelong learning.

As always, you can access NORD’s free rare disease CME programs, created in partnership with Medlive, and sign up for new releases here: https://rarediseases.org/living-with-a-rare-disease/continuing-medical-education-cme/

05/10/2026

Happy Mother's Day to our Rare Mons, Healthcare Providers, and to all who are like a mother to others. We hope that you have a wonderful day.

05/10/2026

🎨 Artists in the rare disease community, we want to see your perspective! Sketch NF has teamed up with Positive Exposure to showcase art inspired by the question: What does rare disease mean to you? Selected pieces will be featured in Positive Exposure’s NYC gallery this July.

Submit your interest form, create your artwork, and email for approval by June 1. Learn more and apply here: https://bit.ly/4dske1T

05/10/2026

Please share your comments. The FDA and government needs to do more for rare diseases, and this will help a lot. Especially for autoinflammatory diseases. Thanks

05/10/2026

Become a mentor today!

Apply now to be a part of the RDLA Advocacy Mentorship Program. Advocates with any level of experience can apply. The program is a year-round support system for advocates seeking more 1:1 assistance in their advocacy development and allows experienced advocates to hone their leadership skills.

Apply here: https://hubs.ly/Q04f7C-X0

05/08/2026

Congratulations to all our upcoming graduates with and immunedysregulatory diseases! Read about Issac, who is a rising star who has CANDLE Syndrome (aka PRAAS) and his impact during his college years. Best wishes to all. https://www.unomaha.edu/news/2026/04/for-graduating-student-isaac-barchus-uno-has-been-much-more-than-a-four-year-journey.php?fbclid=IwdGRjcARqLCJjbGNrBGosAmV4dG4DYWVtAjExAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHkUKHD7QxyD_TsKFcvSuyRd-N_Rv_3eYNbTNRrmZhLJJbxn6WegUiU8btlLw_aem_QFv_P-oCHAU6cz7_4Wk55w

Isaac’s connection with UNO began when he was just 12 years old.