Autoinflammatory Alliance

01/30/2026

Get your tickets soon for this event/fundraiser! Come celebrate Valentine’s Day with the PFAPA Fun Squad inspired by K-Pop Demon Hunters and Saja Boys!

Saturday, February 14, 2026 from 10 am to 1 pm EST
Atlantic County 4-H Fairgrounds
3210 NJ-50, Mays Landing, NJ 08330

Meet & Greet characters with photo ops!!
Wear your favorite Demon Hunter and Saja Boy inspired costumes!!

DJ, dancing, face painting, tinsel fairy hair and hair art, crafts, sensory play, games and lots of fun!!

Lunch served at 11:30am until 12:30pm.

This event is geared for children 8 and under. A parent or guardian must be present at all times at the event, and also buy a ticket. No unattended children will be permitted to attend alone.

Tickets are $30 for adults, and children. Tickets are $15 for children under 2 years of age.

Get your tickets here:
https://givebutter.com/valentineskpop

This event is hosted by the Atlantic County 4-H Youth Program, Autoinflammatory Alliance. and the PFAPA FUN SQUAD. This event is a fundraiser for the Autoinflammatory Alliance and Atlantic County 4H Youth Program.

Valentine’s Day Kid's Party inspired by K-Pop characters w/ the PFAPA Fun Squad, NJ. Lunch & fun! Benefitting 4-H & the Autoinflammatory Alliance.

01/22/2026

The study is still in need of more PFAPA patients: Attention all with PFAPA, or those that had it in the past! 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 mary.bowes@nih.gov. Thank you. Please share this too!

01/14/2026

Introducing The Undiagnosed Exchange | Launching February 2026

Finding your way through medical uncertainty can feel overwhelming, isolating, and exhausting. The Undiagnosed Exchange was created to offer a safe space where people walking this path can learn, share, and connect with others who truly understand.

This small-group program is led by two experienced mental health professionals who both bring clinical expertise and personal insight into the undiagnosed experience. Together, they’ll guide participants through eight supportive, psychoeducational sessions designed to help you navigate life when answers are still out of reach.

The Undiagnosed Exchange is open to anyone who is currently undiagnosed and seeking community, tools, and understanding.
Registration opens January 16, 2026.

For questions or early interest, reach us at support@udnf.org.

A dedicated support line will also be available soon.

01/14/2026

01/14/2026

01/14/2026

Advocacy opportunity: Share your thoughts with your legislators about the Give Kids A Chance Act for rare diseases. Visit the links in the post below.

⁉️ What's next for the Give Kids a Chance Act?

The rare disease community starts the year with renewed efforts to reauthorize the Rare Pediatric Disease Priority Review Voucher (PRV) Program. 2026 offers us unique opportunities to push the Give Kids a Chance Act over the finish line and ensure that our children receive lifesaving treatments.

In the short term, the bill has two paths forward for passage:
- Another unanimous consent vote attempt; or
- Its addition to a broader healthcare or funding legislative package, which may be considered at the end of January or in the months following.

➡️ To read more about PRV updates, visit our page: https://everylifefoundation.org/rare-disease-community-renews-efforts-to-reauthorize-the-rare-pediatric-disease-priority-review-voucher/

➡️ Tell your Senator to support the Give Kids a Chance Act: https://everylifefoundation.quorum.us/campaign/110385/

01/12/2026

Families with young children in and around NJ, you are welcome to come to this fun KPop-Inspired event and fundraiser on Saturday, February 14, 2026 from 10 am-1 pm (Lunch included)!
Location: Atlantic Co 4-H Fairgrounds Building
3210 NJ-50, Mays Landing, NJ 08330
Meet & Greet characters with photo ops!!
Wear your favorite K-pop inspired costumes!! (The theme is based around the biggest animated movie of the 2025).
DJ, dancing, face painting, tinsel fairy hair and hair art, crafts, sensory play, games and lots of fun!! Also performances by the 4-H Cloggers, Karate demos and more.
Thanks to the PFAPA Fun Squad for another amazing opportunity for kids with autoinflammatory diseases, their siblings and anyone in the community. And the Girl Scouts of Atlantic County for volunteering to help with this amazing event.
This fundraiser benefits the Autoinflammatory Alliance and the Atlantic Co 4-H Club.
https://givebutter.com/valentineskpop

Valentine’s Day Kid's Party inspired by K-Pop characters w/ the PFAPA Fun Squad, NJ. Lunch & fun! Benefitting 4-H & the Autoinflammatory Alliance.

01/01/2026

Don’t miss the in-person and virtual celebration of Rare Disease Day at NIH on Friday, February 27, 2026, from 9 am to 5 pm EST.

01/01/2026

Save the date!

WORD Day is coming. WORD Day (World yOung Rheumatic Diseases Day) is a global day to raise awareness that children and young people get rheumatic diseases.

WORD Day takes place on 18 March each year.

So write the date in your diary, follow us on social media, and start thinking about how you can raise awareness in your community for WORD Day 2026.

With huge thanks to PReS (the Paediatric Rheumatology Europe Society) for funding this year’s WORD Day awareness campaign.

01/01/2026

Check out the NORD post and resources to help you get your school or community involved in Rare Disease Day.( The last day of February every year )

Get your school or campus involved this Rare Disease Day, Feb. 28! 🏫

Students, teachers, and administrators play a role in raising awareness for the 1 in 10 Americans with a rare disease. Our School & Campus Playbook makes planning simple and fun.

Inside, you will find ideas like:
• Encourage students and staff to wear stripes
• Set up an info table or host a small fundraiser
• Share striped selfies and invite others to join
• Light up campus buildings in Rare Disease Day colors
• Use ready-to-share educational resources

Download the School and Campus Playbook and start planning today ➡️ https://bit.ly/45owVWq

Already have plans? Let us know in the comments!

12/31/2025

Happy New Year to All! We hope this is the best one yet. Thanks for all your support. 2026 will be our 20th Anniversary year, so stay tuned for some new things coming soon!