Autoinflammatory Alliance

04/06/2026

We hope that all who were celebrating Easter or Passover have been having wonderful celebrations. ❤️

03/17/2026

Last chance to sign up!

Don’t miss the webinar taking place this WORD Day!

“Children are not small adults” and deserve care that truly reflects their unique needs. The webinar on Wednesday 18 March includes expert speakers who will share their perspectives on early recognition and the importance of specialised treatment for children and young people with rheumatic conditions.

Speakers include
- Caroline Kirsten, who will talk about her experience of growing up with a rheumatic condition and the importance of being heard.
- Michael Pölzl, who will talk about the lived reality of navigating systems from a parent and family perspective.
- Alexandre Belot, who will talk about why paediatric rheumatology is different from a clinical perspective.

Hosted by Kabir Budlender (ENCA) and Jordi Anton (EULAR PAED), this is promising to be an excellent and engaging webinar about an important topic.

Sign up at bit.ly/eular2026

03/17/2026

World Young Rheumatic Diseases Day '(WORD Day) is tomorrow, March 18th! This is an important point. Also, more healthcare providers need to understand that most diseases are lifelong conditions, with the majority starting in childhood.

"Behind every adult with a childhood-onset rheumatic disease is a brave child who learned to live, grow, and never give up. Because rheumatic diseases may begin in childhood, but their story unfolds throughout a lifetime, with the combined efforts of patients, families, and healthcare professionals." Dr Jordi Anton

As we approach WORD Day 2026, let’s remember every child and young person with a rheumatic disease, and every adult with a childhood-onset rheumatic disease who is living with their condition day in, day out and never giving up. You inspire us every day.

When times are difficult, you show your strength. When times are good, you demonstrate hope. No matter how difficult things are, remember that you are not alone - there are other people out there with the same condition, and patient organisations who can provide support and information.

Researchers and clinicians are working together with patients and families to better understand rheumatic conditions, and to develop treatments and services throughout the whole life-course - making sure they reflect the different stages of your life as you grow up and the different needs of children, young people and adults.

03/17/2026

The Courageous Parents Network Parent Champion program amplifies the voices of parents as advocates for paediatric palliative care, sharers of the lived family experience, and representatives of CPN. During each Parent Champion orientation, the champions are asked to write and present their 6 words. This exercise, brought to CPN by Living Proof Advocacy, functions as a means of getting to the core of your story and your advocacy as a caregiver.

If you are in need of inspiration to begin sharing your story or looking for a new way to think about your journey, try coming up with YOUR 6 WORDS and let us know what you uncover!

We will be sharing the 6 words of some of our parent champions in our next posts for inspiration.

Interested in being part of our next cohort of Parent Champions? Sign up for our newsletter or follow us on social media for alerts on the opening of applications!
Courageous Parents Network

03/17/2026

New Rare disease Scholarship applications are open now!

The Scholarship Fund is approaching its 500th recipient since launching in 2020. Could it be you?

Applications are now open for the RAREis Scholarship Fund. Thanks to the support of Amgen's RAREis program, the EveryLife Foundation for Rare Diseases will award 58 scholarships of $5,000 to individuals in the rare disease community pursuing higher education in Fall 2026.

Learn more and apply at https://hubs.li/Q04756qS0. Application closes April 28 at 2 PM Eastern.

03/17/2026

☘️🌈🍀💚Happy Saint Patrick's Day from the Autoinflammatory Alliance to all our Autoinflammatory and Immunedysregulatory patients, families, caregivers, siblings, friends and loved ones. We hope that you have a wonderful day full of magical flair and the "luck of the Irish", without a flare-up of your disease today, or in the days that follow. (Sadly fun-triggeted flares happen too often with autoinflammatory diseases).🧡

02/27/2026

Come to the FREE April 16-17, 2026 TARN-NIH 3rd Symposium, and get your abstracts submitted by March 2nd if you want to share a poster! Register here: https://tarnnetwork.org/events/celebrating-autoinflammation-on-the-shoulders-of-a-giant-127

02/20/2026

Today is National Caregiver's Day. Thanks to all who are caregivers in our autoinflammatory and immunedysregulatory community, and to all caregivers for anyone with any health condition. You are important, and appreciated. 🧡

02/20/2026

The U.S. Food and Drug Administration's virtual event will take place on Feb. 23 and showcase collaboration with rare disease patient communities and the latest innovations guiding FDA decisions.

Register here: https://bit.ly/4abBNRD

02/20/2026

Have your say in the Drug Price Negotiation Program. Sign up for virtual patient roundtables or the livestreamed clinician town hall to share your experiences and help shape pricing for these drugs: https://www.cms.gov/engagement

Drugs under discussion include: Anoro Ellipta, Biktarvy, Botox, Cimzia, Cosentyx, Entyvio, Erleada, Kisqali, Lenvima, Orencia, Rexulti, Trulicity, Verzenio, Xeljanz, Xolair, and Tradjenta.