Autoinflammatory Alliance

11/02/2026

Stills/SJIA patients, healthcare professionals and anyone else interested, tune in this week on Friday and Saturday virtually at 8 am EST (5 am PST) to listen to the Next-Gen 2026 program hosted by the SJIA Foundation. 🎥 Live stream will begin around 8:30am EST each morning : https://youtube.com/?si=qFPCdt3u7qs-MZHm

📣 Join us virtually for NextGen 2026 as we bring together patients, families, clinicians, and researchers to advance conversations around systemic juvenile idiopathic arthritis (SJIA), Still’s disease, & Macrophage Activation Syndrome.

Whether you're part of the SJIA/Stills patient community, a caregiver, or a healthcare professional, this is an opportunity to listen, learn, and stay connected to the latest discussions shaping the future of care and research.

🎥 Live stream will begin around 8:30am EST each morning : https://youtube.com/?si=qFPCdt3u7qs-MZHm

Please share and help us spread the word! 🧡

10/29/2026

Congratulations to our friends at AFFMF who have reached their 20th anniversary. We're also happy to share that we have reached our 20th anniversary as an organization! We officially hit 20 on May 1st, right after the big symposium that we helped to manage and make possible at the NIH, and other events. Stay tuned for upcoming news and a program (likely virtual) highlighting our new initiatives impact and more exciting things that are coming! We have gotten things done, but have so much more to do. Thank you all for your support, and help. There are so many to thank.

10/29/2026

✨​20ème anniversaire de l'AFFMF​✨​
Venez célébrer avec nous les 20 années d'action de sensibilisation aux maladies auto-inflammatoires le samedi 7 novembre 2026 !
🎟️ Inscription obligatoire, contribution libre et solidaire ​
🏣​ Université Paris Cité, Campus des Grands Moulins
📍 9 esplanade Pierre Vidal Naquet 75013 PARIS
ℹ️​ Horaires : 14h à 18h (accueil à partir de 13h30)
Programme prévisionnel :
- Intervention des acteurs majeurs de l'association
- Actualités sur les maladies auto-inflammatoires
- Témoignages de malades et des familles
- Pause café conviviale
Inscription en scannant le QR code ou via le lien suivant : https://urls.fr/9_UmiL
Lien disponible en bio
Nous espérons vous y retrouver nombreuses et nombreux !

10/29/2026

10/29/2026

Take a look at this new paper that just came out that shows the benefits and dosing of anakinra and ilaris at the same time for patients with severe CAPS with central nervous system inflammation (CNS) aka brain inflammation, and related tissues. This is very helpful information that you can share with your doctors, other healthcare professionals, or insurance. This paper adds to the data from other papers that show the benefits of combined anti IL-1 medication for severe inflammation.
https://pmc.ncbi.nlm.nih.gov/articles/PMC13659765/

Secure .gov websites use HTTPS A lock ( ) or https:// means you've safely connected to the .gov website. Share sensitive information only on official, secure websites.

10/17/2026

There have been many tributes honoring the legacy and impact of Dr Daniel Kastner MD, PhD. But this one is one of the most inspirational because it shows how he started, at a young age with a science fair project, and onwards throughout his life to seek to understand and advance science, while caring deeply for his patients. His impact is beyond words, but this is quite touching. 🧡

10/08/2026

DAF Day 2026 is here! A nationwide celebration of generosity through Donor-Advised Funds. Workplace matching funds donations, workplace giving, recurring donations all apply.

When you make a DAF gift to the Autoinflammatory Alliance today, you’re helping us Your support will help us greatly to increase patient activities, webinars, update websites, advance research advocacy and more.

Here’s how you can take part:
🧡 Today your DAF can do more than ever before. Join us and be part of the movement.
👉 Give now: https://givebutter.com/DAFdayautoinflammatory
You can donate here on the link below, or through your work or personal giving platform. We are on DAF pay, DAFFY, Benevity, Pledge, Fidelity Charitable, Smart Payables, Cybergrants for various systems and we are open to any donation you can support.
Or just make a donation if you don't have a DAF too. If you have donated through work, message me and I can add it to the manual donation list.

Your support will help us greatly to increase patient activities, webinars, update websites, advance research advocacy and more. Thanks to all who have already donated in the past-thank yous are coming! We appreciate all support, at any amount.

✅ Give easily and get counted in today's impact by giving through DAFpay https://app.dafday.com to help the Autoinflammatory Alliance with the DAF day promotions.

Thank you!

10/07/2026

Is anyone on Tiktock who is willing to share something good that they saw today and hashtag with our org name, the Autoinflammatory Alliance with this Greater Good challenge that could help us win a donation of $50,000? This would help us do more good for many patients, and fund more research. Thank you

10/03/2026

Last hours to donate! This fundraiser supports RELA research, a more recently identified, complex disease. If you can support this memorial research fund in honor of Kapil, it will make a big difference.. Research for this disease can help other autoinflammatory diseases too. We hope that more people can be saved. 🧡

A special thanks, and best wishes to Lauren, Kapil's wife, who is about to do her first Hyrox race in honor of Kapil. He had hoped to be able to do this race.

If you are an expert researcher on RELA, contact me at [email protected] because we want to help this fund support the right research that will change and save the lives of others. Thanks to all for your support.

Donate today to support Kapil’s legacy by funding medical research into RELA Associated Inflammatory Disease.

09/22/2026

This important PFAPA Genetics study still needs a few more patients who have PFAPA, or who are now in remission from it. 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. 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!