National Pandas/Pans Youth Alliance

04/07/2026

As youth advocates, our members are at the center of everything we do. Their lived experiences continue to shape how we understand and speak about PANS and PANDAS.

We are grateful to stand alongside other leading organizations in issuing this joint statement and working together to advance accurate representation of this community. 💚

While true prevalence remains unknown, we do not support labeling these conditions as rare without reliable population data. What we do know is that PANS and PANDAS are significantly underrecognized, and the voices of young people and families consistently reflect delays in diagnosis and access to care.

Our responsibility is to ensure their realities are accurately represented. Until better data exists, underdiagnosis, not rarity, must shape how we approach awareness, care, and policy.

We remain committed to amplifying youth voices and addressing gaps in clinical education, tracking, and research to more accurately determine prevalence.

Thank you all for joining us in this fight!

03/31/2026

Please help Missouri if you can!

🎉 WE DID IT, MISSOURI! 🎉

Thank you to everyone who shared, supported, and pushed our Bill forward. Your voices made this happen, and we are so grateful.

We officially have a HEARING for SB 1263 at the Jefferson City State Capitol — Tuesday, March 31st at Noon!

Now it’s time for the next step — and we need our PANS/PANDAS Missouri parents more than ever.

💚Missouri requires in‑person testimony
💚We need parents who can show up and stand with us
💚If you are able to testify in person, please send a private message with your first and last name so we can add you to the official list required for the hearing

We’ve come this far together. Let’s finish this strong and show Missouri what our community can do.

Let’s pack that hearing room. We’ve got this.

03/20/2026

Major updates from our PANS/PANDAS Capitol Hill Advocacy Days! 📣🌟

Because of last year’s advocacy, Congress has taken real steps forward for the PANS/PANDAS community.

Watch to hear the three major updates you need to know ⬆️

PLUS don’t miss the next Capitol Hill Advocacy Day (happening virtually!) on April 8th with NAPPA - National Alliance for PANS / Pandas Action and Center for Lyme Action

Registration closes TOMORROW (March 20)!

🔗 https://centerforlymeaction.org/ianc/

Together, real change is happening. 💚

03/17/2026

Your experiences matter — especially in systems that haven’t always listened. 💛 By sharing mood, sleep, focus, and daily-life challenges in the Mood and Behavior Questionnaire, you help researchers understand complex, autoimmune, and post-infectious illnesses. Make your voice count: https://unhidenow.org/unhide-project-mood-and-behavior-questionnaire/

03/03/2026

There’s a place for everyone at NPYA 💚

Swipe to see all of our tiers, including our NEW “NPYA Junior” option!

Whether you want community or are a future advocate, we can’t wait to meet you.

(Huge thank you to Caroline R. for making this amazing post!)

02/16/2026

For many with PANS/PANDAS, recovery can feel impossibly far away….

But listen to Emma share how she was able to ride a bike again for the first time in SEVEN YEARS! 🎉🫶

The road is often long, but don’t give up hope! We’re here for you every step of the way. 💚

02/01/2026

🚨CALL TO ACTION🚨
➡️We need to begin the conversation on the massive lack of support for students with PANS/PANDAS across the country
➡️While PANS/PANDAS is technically protected under chronic illness protocols in schools, it remains misunderstood by teachers and faculty who often deny access to much-needed accommodations (like 504 plans and IEPs)
➡️If you want to be apart of the solution, begin talking to your teachers and fellow students about PANS/PANDAS
➡️Join the National PANDAS/PANS Youth Alliance to begin advocacy work and give PANS/PANDAS students access to the school accommodations that they need!
➡️Nonprofits and advocates need to pay attention to this massive injustice‼️ Together we can change the state of public school policy to better support those living with PANS/PANDAS 💚💚💚

01/24/2026

Listen up to ’s AMAZING speech at the Texas Capitol on October 9th, 2025! 🗣️🗣️🗣️💚

Trent’s story is nothing short of incredible, and his resilience + commitment to advocacy are both truly outstanding.

We’re so grateful to have him in NPYA!

01/23/2026

‼️💚

📣 Missouri Families — We Need You 🔊

Missouri PANS PANDAS Coalition (MPPC) needs you to get involved today.

Progress is being made in Missouri, but real change only happens when legislators hear directly from the families they represent.

You don’t need to be an expert in policy or medicine.
You are the expert in your lived experience.

Your story matters. Your voice matters. And we’ll guide you every step of the way, always at your comfort level.

👉 Everything you need is right here:
🔗 https://aspire.care/featured/missouri-pans-pandas-updates

✅ CTA #1: Stay Connected

Help us reach you quickly and consistently when action is needed.

📝 Fill out the Missouri Contact Form:
🔗 https://aspire.care/featured/missouri-pans-pandas-contact-form/

🏛️ CTA #2: Contact Your Senator

Please reach out to your state senator, request an in-person or virtual meeting, or send a letter or email.

📌 Share:
• Your family’s story
• Why PANS/PANDAS care matters
• How lack of insurance-based care has impacted your child and family
• Ask them to support SB 1263 (Colton’s Law)

🗂️ Talking & writing points provided here:
🔗 https://aspire.care/blog/legislative-talking-writing-points/

Legislators expect to hear from constituents and your voice helps them understand what this looks like in real life.

💚 This is a marathon, not a sprint.
And change happens voice by voice, family by family.