In March 2026, nine national and international PANS/PANDAS advocacy organizations issued a joint statement on the ongoing debate about the prevalence of PANS and PANDAS. The organizations noted that the true prevalence is unknown and expressed concern that labeling these conditions as rare lacks sufficient evidence. They cautioned that such characterizations may lead to under-recognition and barriers to care.
The statement outlines key limitations in current prevalence data, such as underdiagnosis, limited clinician awareness, lack of a dedicated diagnostic code, and insufficient surveillance and research infrastructure. The organizations recommend caution in making definitive claims about rarity until robust population-based studies are conducted, and they emphasize the need for better recognition, research, and access to care.
Read the full Joint Statement on PANS/PANDAS Prevalence below.
Gabriella True
