For Families

Welcome to PRAI. Each day, we work to improve the lives of your children and the families who care for them. While PRAI’s mission centers around achieving the scientific advances, industry recognition, and physician education needed to effectively treat and ultimately cure these disorders, we also want to make sure families have access to the best information needed to advocate and care for their kids today. We hope you find the information below to be helpful, and encourage you to become part of the larger PRAI community by attending an upcoming event, volunteering or signing up for our mailing list.

I Think My Child May Have PANS or PANDAS, but I am unsure.

One of the biggest challenges facing our parents is the inconsistency of understanding and knowledge of the disorders among the medical community. Many pediatricians are not familiar with the diagnostic criteria for PANS/PANDAS or the current research available. As many PRAI families can attest, you often need to be your child’s greatest health advocate to get proper diagnosis and treatment. Please refer to the PANDAS Physicians Network for the latest information on clinical guidelines to share with your medical team.

Patient Registry/Biobank

Last year, with your amazing help, we raised $150,000 for PANS/PANDAS research. PRAI is excited to announce our partnership with Genetic Alliance to establish PEER, an open-source registry, and independent biobank.

When we saw this amazing Ted Talk, by Sharon Terry, CEO and Founder, we were so inspired, we knew this was an avenue that we had to pursue with our research funds.

PRAI believes that patients and their families have unique insight that will contribute to more targeted research and increase our understanding of neuroimmune illnesses. By sharing information with one another, we are able to identify key trends that can help define a cohort or produce a hypothesis. Our personal involvement and activism has a role in accelerating scientific knowledge, leading to novel and more effective treatments or a cure.

We are committed to empowering our community to help advance our knowledge of neuroimmune disorders by participating in the scientific process. The Genetic Alliance PEER platform and biobank allow families the ability to shape their own healthcare by providing resources, facilitating research and improving care by partnering with providers. PRAI wants to serve as a link between families and providers making this innovative resource available to ultimately transform the health of our children. Genetic Alliance is a catalyst for both clinical and translational research, making biological samples accessible, while adhering to strict quality control, ethical and privacy standards. Together, with our children’s interest at the forefront, we can be directly involved in promoting scientific innovation and more rapid and efficient progression of research. Learn more about PEER and Genetic Alliance’s Biotrust.