We know how overwhelming it is to navigate this complex medical illness. We hope you find the resources above useful in your journey. Whether you're at the state of advocating for your child, advocating for the cause, or both, we want you to know, you are not alone. We are here. And we will stay here, until we find a cure for childhood neuroimmune disorders.
Why is PRAI working towards a patient-centered research model?
When we saw this amazing Ted Talk, by Sharon Terry, CEO and Founder of Genetic Alliance, we were so inspired, we knew this was what the PANS community so desperately needed. We needed our power back and our voice to be heard.
PRAI believes that families have unique insight that will contribute to more targeted research and increase our understanding of neuroimmune illnesses. By sharing medical and environmental data and providing biological samples through an anonymous open-source model under Genetic Alliance, we can allow families the ability to shape their own healthcare by providing the infrastructure for true collaboration between the scientific and patient community.
Together, with our children’s interest at the forefront, PRAI can be directly involved in promoting scientific innovation and more rapid and efficient progression of research in collaboration with our community. By providing the necessary crowdfunding tools and engaging a broad volunteer base we will prioritize the research projects PANS families want to see happen. PRAI will work towards continuing to build relationships with the scientific community to encourage their involvement and make this vision a reality.
But as candidly as possible, we can't do this without your help. There's no top heavy organization here. PRAI is the PANS community. It's up to us. All of us. That's what the PRAI's vision is all about.