If there’s one thing I learned early on in this journey, it’s that no one should have to walk it alone. When you’re facing something as complex and misunderstood as PANS or PANDAS, finding a community, people who get it, can be just as important as finding the right treatment.
This page is dedicated to the organizations that are moving the needle: advocacy groups, nonprofit foundations, and research groups that are raising awareness, funding studies, supporting families, and pushing for better diagnostics and treatments. These are the groups working tirelessly behind the scenes, lobbying for legislative change, educating physicians, and offering hope to families in crisis.
Whether you’re looking to connect with others, stay updated on the latest research, or get involved in advocacy efforts, these organizations are an essential part of the broader movement to bring understanding, legitimacy, and healing to those affected by PANS/PANDAS, OCD, biotoxin illness and those seeking herbal medicine and natural healing.
PANS and PANDAS Specific Sites
PANDAS Network
One of the leading advocacy groups dedicated to raising awareness about PANS/PANDAS. They offer a wealth of information on symptoms, treatments, and research, and help connect families with knowledgeable providers.
The PANDAS Physicians Network (PPN)
A valuable resource for both parents and healthcare professionals, PPN provides guidelines on diagnosing and treating PANS/PANDAS. They also maintain a directory of providers familiar with the disorder.
ASPIRE (Alliance to Solve PANS and Immune-Related Encephalopathies)
ASPIRE offers comprehensive educational resources and works on policy changes to improve healthcare access for families dealing with PANS/PANDAS.
International OCD Foundation (IOCDF) – PANS/PANDAS Special Interest Group
While focused on OCD, IOCDF has a dedicated section on PANS/PANDAS and offers resources for managing associated symptoms like intrusive thoughts and compulsive behaviors.
Plant Medicine
Herbal Reality. An educational platform that brings together traditional herbal knowledge, scientific research and practical guidance. It’s written by experienced herbalists and health experts from the world of herbal medicine and natural health. The site has over 200 detailed herb profiles, clinical research, educational tools, and more. It’s a great resource for anyone looking to explore herbal healing.
Mold & Biotoxins
ISEAI (International Society for Environmentally Acquired Illness. ISEAI is focused on identifying, treating, educating about, and researching environmentally acquired illnesses, such as mold-related illness, chronic Lyme, chemical sensitivities, CIRS, and MCAS. Their mission to integrate environmental illness awareness into mainstream medicine through clinical practice, education, and research. They offer directories of practitioners experienced in treating complex, environmentally-triggered illnesses like PANS/PANDAS.
Surviving Mold. A resource for anyone whose health has been affected by water-damaged buildings (aka biotoxin illness or CIRS). It has Dr. Shoemaker’s VCS test and science-backed guidance, clinical protocols, practitioner network, webinars and books.
Change the Air Foundation. Change the Air Foundation is an organization dedicated to raising awareness about the connection between indoor air quality and chronic illness, especially in children. Their mission is to educate, empower, and equip families to take control of the air they breathe, whether at home, school, or work. They have resources like podcasts, mini-classes, FAQs and guides.