SciELO
Latin America, Caribbean, Iberia, South Africa
Open-access regional index covering peer-reviewed journals across 16 countries. Strong coverage of Brazilian and Argentine work on Sydenham's chorea and post-streptococcal disease.
PANS / PANDAS Resource Hub
You are not imagining this.There is a name for it.
Compass for PANS/PANDAS is a curated home for families and clinicians navigating Pediatric Acute-onset Neuropsychiatric Syndrome. We aim to bring together the organizations, research, and community resources to shorten the time to diagnosis.
Beta — for informational purposes only. Not a substitute for professional medical advice.
Step 01 · Recognize
What PANS/PANDAS can look like
If you're here because something about your child changed, suddenly, and in a way that doesn't quite fit, this list is for you.
Charting a Path.
No child will have every symptom below. PANS/PANDAS typically arrives as a sudden cluster — a handful of these appearing together over days, not the whole list. Parents are almost always the first to notice. Trust what you are seeing. The language here is meant to help you describe it to someone else.
This reference is for orientation, not diagnosis. If you recognise a sudden cluster of these changes in your child, bring this list to a clinician who understands post-infectious neuropsychiatric conditions.
Step 02 · Take it to a doctor
How to talk to your doctor
A gentle, practical guide for raising PANS/PANDAS with a doctor who may be unfamiliar with it.
Getting Oriented.
Thousands of families have had this exact conversation. Many were dismissed the first time. The five steps below are what they wish they had known going in: how to be prepared and calm, so the appointment moves your child forward instead of leaving you stuck.
Your progress0 of 5 steps read
Write down exactly when symptoms appeared, how sudden the onset was, what changed from your child's baseline, and whether you noticed any illness, infection, or fever in the weeks before. Date everything — even rough dates help.
What to log
Date symptoms first appeared
Even an approximate week is useful.
How quickly they came on
Hours? Overnight? Over a few days?
Specific symptoms observed
Use the symptom reference above for language.
Any recent illness, strep exposure, or infection
Including in siblings or classmates.
Any previous episodes and what triggered them
Impact on school, sleep, eating, and daily life
This guide supports your conversation — it does not replace clinical advice. You and your doctor are on the same team, working toward the same thing: your child, well again.
Step 02 · Find care — Clinician directories
Find a PANS/PANDAS clinician
Four trusted directories from leading advocacy organizations to help you connect with experienced clinicians.
Browse clinician directoriesInflamed Brain Alliance, Neuroimmune Foundation, PANDAS Network & more.
Step 03 · Find support
Where to start
Vetted advocacy groups, clinics, and government resources.
- CanadaAdvocacy
Inflamed Brain Alliance
Canadian-led alliance raising awareness of neuroinflammatory conditions in children, including PANS/PANDAS.
Visit - United StatesAdvocacy
PANDAS Network
The leading US PANDAS/PANS nonprofit — research funding, provider lists, and family programs.
Visit - United StatesResearch
Neuroimmune Foundation
Funds research and education on pediatric neuroimmune disorders including PANS/PANDAS.
Visit - United StatesResearch
Brain Inflammation Collaborative
Collaborative research initiative studying inflammation-driven neuropsychiatric illness.
Visit - United StatesGov
NIMH — PANDAS Page
National Institute of Mental Health overview of PANDAS diagnosis, treatment, and research.
Visit - United StatesClinic
PANS Institute (Stanford-affiliated)
Specialty multidisciplinary clinic and clinician-education program for PANS/PANDAS.
Visit - United StatesSupport
OCD Foundation — PANDAS Section
International OCD Foundation's dedicated PANDAS/PANS information and provider directory.
Visit - United StatesAdvocacy
PANDAS / PANS Advocates
Grassroots advocacy network pushing for insurance coverage and recognition.
Visit - United StatesAdvocacy
ASPIRE Alliance
Alliance to Solve PANS & Immune-Related Encephalopathies — research, awareness, family resources.
Visit - United KingdomAdvocacy
PANS PANDAS UK
The UK's leading charity for PANS and PANDAS — family support, clinician training, and national awareness campaigns.
Visit - United KingdomSupport
OCD-UK — PANDAS Information
Long-running UK OCD charity with dedicated guidance on PANDAS/PANS for families and professionals.
Visit - United KingdomClinic
British Paediatric Neurology Association
Professional body for UK paediatric neurologists — useful for locating specialists familiar with neuroinflammatory conditions.
Visit - AustraliaAdvocacy
PANS Australia
National parent-led advocacy and support group offering education, family resources, and clinician outreach across Australia.
Visit - New ZealandSupport
PANS Australia & New Zealand Advocacy
Cross-Tasman parent network supporting research, advocacy, and family Facebook communities for PANS/PANDAS families in NZ and AU.
Visit - ItalyAdvocacy
PANS PANDAS Italia APS
Italian volunteer association founded by parents — clinician network, school program, and family support across Italy.
Visit - SwedenAdvocacy
SANE — Förbundet för autoimmuna encefaliter
Swedish federation for PANS, PANDAS, and autoimmune encephalitis — research advocacy, family support line, and clinician education.
Visit
Step 04 · Follow the science — Journals
The research, as it publishes
Direct, unfiltered queries against the NCBI PubMed and Europe PMC APIs. Updated every time you open a tab.
Source:PubMed
Query:
(PANS OR PANDAS) AND (pediatric acute-onset neuropsychiatric syndrome)Step 04 · Go deeper — Bookshelf
Books worth reading
Curated books for parents, educators, clinicians, and kids navigating PANS, PANDAS, and pediatric neuroimmune disorders.
The Comprehensive Physicians' Guide to the Management of PANS and PANDAS
by Dr. Scott Antoine
An evidence-based clinical guide covering diagnosis, testing, and effective treatment approaches for physicians and other medical professionals managing PANS and PANDAS patients.
For: Physicians, clinicians, advanced practitioners
Brain Under Attack
by Beth Lambert, Maria Rickert Hong, Roseann Capanna-Hodge, Lauren Lee Stone, Jennifer Giustra-Kozek
A parent and caregiver resource that explains what PANS, PANDAS, and autoimmune encephalitis are, why diagnoses are rising, and what families can do to pursue root-cause treatment.
For: Parents, caregivers, educators
Demystifying PANS/PANDAS
by Nancy O'Hara, MD MPH FAAP
A functional medicine desktop reference on basal ganglia encephalitis written for clinicians, but accessible enough for parents who want to understand the medical framework behind PANS and PANDAS.
For: Clinicians, parents, advocates
Saving Sammy
by Beth Alison Maloney
The book that introduced many families to PANDAS. Maloney tells the story of her son’s sudden onset of OCD and tics, and the fight to get a proper diagnosis and treatment.
For: Parents, caregivers, clinicians
Childhood Interrupted
by Beth Alison Maloney
A comprehensive guide to PANDAS and PANS: what to look for, how to talk to doctors, treatment basics, and school advocacy from the author of Saving Sammy.
For: Parents, educators, clinicians
PANDAS and PANS in School Settings
by Patricia Rice Doran
A practical handbook for teachers, counselors, and school staff on supporting students with PANDAS and PANS through 504 plans, IEPs, and classroom accommodations.
For: Educators, school staff, parents
PANS, CANS, and Automobiles
by Jamie Candelaria Greene
A parent-friendly guide that walks families through the PANS/PANDAS journey, from symptoms and diagnosis to treatment and navigating everyday life.
For: Parents, caregivers
In a Pickle Over PANDAS
by Sophie Langsdown
A warm, age-appropriate children’s book that explains PANDAS to kids, helping them feel understood and less alone in their symptoms and treatment.
For: Children, families
As an Amazon Associate, PANS Pandas Canada earns from qualifying purchases. Prices and availability are subject to change.
Step 04 · Follow the science — Beyond PubMed
Regional & multilingual databases
PubMed under-indexes work published in Portuguese, Spanish, Arabic, and French — exactly the languages of regions with the highest rheumatic-fever and post-streptococcal disease burden. These indexes deep-link straight to pre-built searches.
Portuguese · Spanish · English
BVS / LILACS
Latin America & Caribbean (PAHO/WHO)
Virtual Health Library hosted by BIREME/PAHO. LILACS is the most comprehensive index of Latin American & Caribbean health literature — much of which never reaches PubMed.
IMEMR
WHO Eastern Mediterranean Region (22 countries)
Index Medicus for the Eastern Mediterranean Region, maintained by WHO EMRO. Surfaces clinical research from countries with high rheumatic fever burden that is rarely indexed in PubMed.
AJOL
Africa (Africa Journals Online)
The world's largest collection of African-published peer-reviewed scholarly journals. Critical for rheumatic fever and post-streptococcal research from sub-Saharan Africa.
Note: these databases don't publish a public JSON API, so results open in a new tab on the source site rather than rendering inline. Article counts and rankings reflect each database's own indexing.
Step 04 · Follow the science — Trials
Studies recruiting now
Active and upcoming clinical studies for PANS/PANDAS, Sydenham's chorea, and post-streptococcal neuropsychiatric disease. Queried live from the ClinicalTrials.gov v2 API.
Filter:Recruiting · Not yet recruiting · Active · Enrolling by invitation
Query:
"PANDAS" OR "PANS" OR "Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infections" OR "Pediatric Acute-onset Neuropsychiatric Syndrome"Step 04 · Follow the science — Research centres
Where the science is happening
Academic and clinical programs, biobanks, and global registries advancing PANS/PANDAS and post-streptococcal research across six continents.
Explore all research centres30+ centres and global initiatives across six continents.
STEP 05 · IN THE MEDIA
Stories beyond the journals
Journalism, documentaries, podcasts, and family essays that help the rest of the world understand what you've been living.
- BBC FutureNews
How a common throat infection can rewire children's brains
Jamie Ducharme on the families and clinicians working to get PANDAS recognized as a real, treatable condition.
bbc.comAug 2025 - Undark MagazineMagazine
When Infection Sparks Obsession: PANDAS and PANS
A long-form look at why pediatric acute-onset neuropsychiatric syndromes are so often missed — and the science catching up.
undark.orgApr 2024 - CBC NewsNews
Young boy's OCD 'nightmare' linked to strep infection
A West Quebec family's fight for diagnosis and treatment — one of CBC's earliest PANDAS features.
cbc.caDec 2015 - CBC NewsPersonal Story
Calgary parents raise awareness about little-known childhood illness
Marnie and Richard Deschenes share their son's three-and-a-half year journey to a PANDAS diagnosis.
cbc.caJan 2020 - The TransmitterNews
How a controversial condition called PANDAS is gaining ground on autism
Why mainstream pediatrics has been slow to adopt PANS/PANDAS protocols, and what is changing.
thetransmitter.orgOngoing - PANDAS NetworkBlog
PANDAS Stories — Voices from the Community
A growing archive of family stories, treatment journeys, and recoveries shared by parents.
pandasnetwork.orgOngoing - My Kid Is Not CrazyDocumentary
Documentary: My Kid Is Not Crazy
Tim Sorel's feature documentary following six families navigating PANDAS diagnosis and treatment.
youtube.com2018 - The MightyPersonal Story
My Child Was Diagnosed With PANDAS 3 Years After Onset
A parent's account of the long road to diagnosis, from The Mighty's PANS/PANDAS community hub.
themighty.comOngoing - Science NewsMagazine
How strep throat may spark mental illness in some kids
Plain-language reporting on the immune mechanisms linking strep infection to sudden-onset neuropsychiatric symptoms.
sciencenews.orgFeature - VTDiggerNews
A rare condition can send kids into fits of rage
A Vermont family's fight for treatment access — and what insurance coverage looks like for PANS/PANDAS care.
vtdigger.orgFeb 2026 - PANDAS Physicians NetworkBlog
Commentaries on PANS/PANDAS Research
Clinician-written commentaries translating new research into language families and pediatricians can use.
pandasppn.orgOngoing - Stanford Medicine — PANS ProgramNews
Latest News from the Stanford PANS Clinic
Updates on Stanford's pioneering PANS research, clinical care innovations, and program announcements from the world's first multidisciplinary PANS clinic.
med.stanford.eduOngoing - ASPIREBlog
PANS/PANDAS Awareness Stories & Advocacy
News, advocacy wins, and lived-experience stories curated by the Alliance to Solve PANS & Immune-Related Encephalopathies.
aspire.careOngoing
Inclusion is not endorsement. Some pieces are first-person and may contain treatment choices that differ from your clinician's guidance.
STEP 6 · CONNECT
You don't have to do this alone.
The people who get it, and the tools that let you walk into the next appointment ready.
Community
PANDAS Canada — Facebook Group
Active Canadian parent community sharing province-specific guidance and lived experience.
OpenFamily SupportPANDAS Network Support Groups
Directory of U.S. and international peer support groups, regional meet-ups, and family navigation.
OpenPeer Forumr/PANDAS on Reddit
Anonymous, around-the-clock peer support from families and adults living with PANS/PANDAS.
OpenClinicianPANDAS Physicians Network
Clinician-facing network with diagnostic guides, commentaries, and the latest medical guidelines for PANDAS/PANS.
OpenToolkitNew-to-PANDAS/PANS Family Guide (PDF)
Printable starter guide from PANDAS Network for families and practitioners new to the diagnosis.
OpenSchoolPANS/PANDAS in the School Setting Toolkit
ASPIRE's twenty-page educator toolkit on accommodations, IEP/504 language, and re-entry after a flare.
OpenReference · Glossary
Terms you will encounter
Plain-language definitions of the clinical, immunological, and research terms used across this site and in the wider PANS/PANDAS literature.
Made with ♥ by a Canadian PANS/PANDAS family
This site is built and maintained by parents who have lived this journey. If it helped you find your bearings, a small contribution keeps it online.