PANDAS NETWORK-ORG NON-PROFIT TO CURE AUTO NEUROPSYCHIATRIC SYNDROM

PANDAS Network works to support national parent advocates through the initiation and adoption in 2013 of October 9th Awareness Day. These created nationwide proclamations and resolutions that have led to support of insurance and advisory councils across the U.S.

We strive too advance care access for children through media campaigns including television and print. We design literature and resources for families, educators and the medical community. We advance these efforts by exhibiting at professional conferences, sharing stories of healing with the media and making resources available for parent volunteers.

Micro gifts have been granted to leading experts since 2013 to stimulate PANS consortia research. Annual gifts have gone to U of S. Florida, Harvard, Stanford, Georgetown, Columbia U, and U of MO. We seek to expand this as inquiries increase worldwide. International interest reaches globally now to Australia, Turkey, United Kingdom, and Italy.

We established the first ever PANDAS conference in 2012 in San Francisco, California. In 2018 800 people attended the Common Threads conference (Columbia U). CME for Doctors and nurses were provided. National media attention was given to this event by ABC 20/20 and Nightline. We have sponsored and co-sponsored seven conferences worldwide: U.S. (MA-2013; CA-2014; RI-2014; DC-2016; NY-2018) and, in Europe (Italy-2015 & 2016; UK-2018).

Our HIPAA compliant registry will increase the awareness of how PANDAS/PANS-AE impacts the life of the patient and family. Our goal is to intercept it with the consortia registries that contain biodata. This patient registry will allow researchers and advocates around the world to track the health and outcome of our children. Ideally, a comprehensive comparison of diagnosis and treatment would be done annually to track true progress.