Last year at the family conference, Dr. Hayflick announced that work had begun on a set of guidelines called “Best Practices in PKAN” that would provide recommendations and instructions for taking care of a child or adult with PKAN. This project was funded by the NBIA Disorders Association, Hoffnungsbaum, e.V., and Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro. After collaborating with knowledgeable specialists in various fields, such as neurology, nutrition, ophthalmology, and physical therapy, these guidelines are almost ready to submit for publication.
Before we submit this to a scientific journal, we would like to get input from you, the families who live with and manage PKAN every day. Your personal experiences will add valuable insight and help us create a set of gold standards for the diagnosis and management of PKAN.
You can request a copy of the best practices guideline by emailing PKANready@ohsu.edu. Feedback is due back in 2 weeks on July 12th.