If you, or someone you know has an inherited metabolic condition (e.g. PKU, VLCAD, MSUD, etc.), we need your feedback.
Very soon you will be receiving information on a survey being conducted by Georgia PKU Connect*.
The purpose of this survey is to gain a better understanding of the challenges faced by individuals with metabolic conditions in accessing resources needed for the optimal management and treatment of the disorder. Our intent is to examine many major aspects of disorder management including medical care, lab visits, insurance availability and social support, with an eye toward minimizing or eliminating barriers to optimal care in the future.
The survey shouldn’t take more than about 15 minutes to complete. All responses will be held confidential – no names or other identifying information will be collected – and used only for the purpose of decision-making by Georgia PKU Connect. Results will be shared in a summarized format with Emory Clinic to coordinate resources promoting a community support network.
Around August 7, we ask you to be on the look out for the upcoming email announcing the opening of the survey, and to then take time to carefully and thoughtfully fill it out.
Your responses will greatly help all of us as we seek the best possible care for those impacted by these rare inherited metabolic disorders.
Thank you!
*Georgia PKU Connect is a non-profit organization dedicated to connecting individuals with PKU tothe resources they need to manage their condition. It also frequently assists with other inherited metabolic conditions.