Autoinflammatory Alliance

12/21/2025

Annual giving is welcome, and will make a big difference. Thanks to all who have supported our org this year. If anyone wants to donate before the end of the year, and the new tax changes, please consider a donation by New Years at this link: https://givebutter.com/autoinflammatorygiving25

We are on many work matching donation platforms. And we an do letters for anyone that wants to ask for matching funds from their donations too.

Contact karen@autoinflammatory.org if you have any questions. I will have some availability during the holidays outside of Dec 24-25th ,and my RN job. We appreciate you all so much!

12/21/2025

East Coast Families: Don't miss this party! Tickets are available for the upcoming Noon Year's Eve character IHOP pancake breakfast, DJ dance, games, sensory play and party to usher in New Year’s Eve at Noon on 12/31/25 in New Jersey! This fundraiser benefits the Autoinflammatory Alliance and the Atlantic County 4-H, who are volunteering to help with this event, and offering their venue. Thanks PFAPA FUN SQUAD for your amazing event, and all your efforts. Get your tickets here: https://www.eventbrite.com/e/noon-years-eve-breakfast-party-fundraiser-by-the-pfapa-fun-squad-tickets-1978362727173?aff=oddtdtcreator

Come to the "Noon" Year's Eve Party for kids in NJ 12/31/ 2025 from 10 am-1 pm. Character Pancake breakfast & fun for all!

12/14/2025

Happy Hanukkah to all who are celebrating, and we wish you peace, as we do for all during this season of holidays with light and love. Our thoughts are with those in Australia, and all around the world who are mourning the attack on the first night of Hanukkah at Bondi Beach.

12/02/2025

One of the many initiatives that we have finished this year was the publication of our patient survey data on the challenges and burdens of living with an disease. The paper helps healthcare professionals to better understand the needs and challenge for patients, including symptoms that can come with or without a fever. https://ero.eular.org/article/S3050-7081(25)00009-6/fulltext
Your support for what we do helps us greatly. Please consider donating today on 2025 at the link in the comments. This was a collaboration with a number of researchers, with the input of hundreds of patients. Thank you!

By the end of 2025, we have donated over $50,000 to targeted scientific research studies at institutions to directly help autoinflammatory diseases with complex, systemic issues. Stay tuned for more details. More funding is needed for that level of research.

Helping advance care and treatment, and supporting patients is our goal. Please help us to be able to do more. Thanks so much.

Systemic autoinflammatory diseases (SAIDs) significantly impact patients’ and their families’ quality of life (QoL). This international study aimed to evaluate the extent of this burden by gathering patient-reported data on their SAIDs and its effects on daily living and well-being.

12/01/2025

Giving Tuesday is this week! Please donate to the Autoinflammatory Alliance so we can fund more research, develop more programs to help patients, and update all our websites. Plus improve awareness and understanding for these rare diseases with healthcare professionals, and others with an upcoming Autoinflammatory Network, and other plans.

Please donate at this link, and you can sign up to be a peer fundraiser to help share this fundraiser and tell your story to anyone you know too. Thanks to all that have donated, volunteered and run fundraisers.

Please help the Autoinflammatory Alliance advance research, awareness and care for patients with these rare diseases.

12/01/2025

We hope that you all had a wonderful Thanksgiving.
Thanks to all who have supported the Autoinflammatory Alliance with awareness posts, fundraisers, donations and volunteering. We cannot do it without you!

11/18/2025

Please donate to support the program, & send messages to honor Dr Kastner via the official onine donation link. ISSAID & TARN are co-sponsors, and the Autoinflammatory Alliance is also a collaborator.. We welcome other orgs & institutions to support the symposium-This can be done w/ ISSAID or our org. Thanks! 🧡

All donations benefit this program, and support the task force working group that will address unmet needs for patients, clinical trials and help to improve the path to more treatments for patients with autoinflammatory diseases. We welcome other orgs & institutions to support the symposium-This can be done w/ ISSAID or our org. Thanks! 🧡
Donate here: https://givebutter.com/c/autoinflammatory2026.

Save the date and fundraising page to support the April 2026 Celebrating Autoinflammation: On The Shoulders of Giants 3rd NIH-WRNMMC Autoinflammatory and Immunedysregulatory Symposium also honoring the impact of Dr Dan Kastner MD PHD.

11/18/2025

Register now for the 3rd Symposium on Autoinflammation and Immune Dysregulation at the National Institutes of Health (NIH), Bethesda, Maryland, USA April 16–17, 2026. We will also be honoring Dr Kastner too.🧡 Register here today. FREE! https://tarnnetwork.org/events/celebrating-autoinflammation-on-the-shoulders-of-a-giant-127

This will be the first post pandemic large autoinflammatory and Immunedysregulatory meeting held in the US. The 2nd symposium, which we co-sponsored was in 2019.

This 3rd symposium is a collaboration with the Translational Autoinflammatory Disease Network (TARN), the International Society of Systemic Auto-inflammatory Diseases (ISSAID) along with the NIH.

The Autoinflammatory Alliance is also involved this year too, and we are helping to fundraise for this important meeting. See donation information in the comments.
American College of Rheumatology

11/18/2025

There is a free webinar on November 19th to help rare disease families with open enrollment and insurance choices for the coming year. https://rarediseases.zoom.us/webinar/register/WN_spnUNzq9SrimzpI8hm5aig #/registration

Learn how changes to Medicare, Medicaid and the ACA could affect access to affordable health care in our free webinar, “Stay Covered: Open Enrollment Essentials for Rare Disease Families,” Nov. 19 at 2 p.m. ET. Register here: https://bit.ly/4nUYIEm

11/18/2025

📢 Participa en RheumaVision 2026: una actividad de EULAR y EMEUNET .

💯 Una oportunidad única para jóvenes reumatólogos/as e investigadores/as de países miembros de EULAR, quienes deben crear vídeos breves y dinámicos (de 3 a 5 minutos) sobre un tema clave en Reumatología.

¡Tienes hasta el 1 de diciembre para enviar tu vídeo!

Más información: ➡️ https://www.ser.es/participa-en-rheumavision-una-actividad-de-emeunet/

11/11/2025

For Veterans Day today, thsnk you for your service, and we also honor all who have servedRemembrance Day globally. We appreciate and honor you today, and always.