'Most local providers are not trained on Rett syndrome...'
From their website: The International Rett Syndrome Foundation is committed to advancing and expanding our community’s access to best-in-class Rett syndrome care. Toward that end, we are designating 15 partner clinics across the U.S. to our Center of Excellence Network.
“Establishing this network is part of IRSF’s goal to get families the expert Rett clinical care that their loved ones need to thrive,” says IRSF CEO Melissa Kennedy, “Our goal is that the vast majority of families living with Rett syndrome have access to a Rett syndrome expert by 2023.”
Most local providers are not trained on Rett syndrome, and many families find it difficult to locate a physician who knows how to care for individuals with Rett. Further, once they find an expert provider, these families may have to travel for an entire day to reach that expert’s clinic and the life-changing healthcare insights it offers.