You just found out you are the parent of a child with PKU. First of all congratulations on the birth of a new member of your family!

By now, you have probably received some basic information about PKU. You have also probably spent countless hours searching Google for anything else you could find out (that may have been what brought you here), and frankly some of what you have read or heard may have sounded daunting. Be encouraged. As you will see as you review this site, PKU presents challenges but with proper treatment it need not be an insurmountable obstacle. Georgia PKU Connect consists of other PKU parents, relatives, children and even adults with PKU and we are here to assist you in your journey.

Though the whole site contains valuable information, this page is designed to provide links to give you a “quick start” –  a guide to what may interest you first. Hopefully this will be helpful, but also please reach out to us and “connect”.

  • How to connect with someone at Emory Hospital regarding treatment:
    • Emory Clinic Department of Human Genetics
      2165 North Decatur Road
      Decatur, GA 30033
      (404) 778-8570
  • How to make contact with someone from Georgia PKU Connect. This is also a good way to ask those “burning questions”.
  • Get plugged in to the larger PKU community through the National PKU Alliance.
  • Getting help with insurance coverage.
  • Find helpful information about insurance coverage for PKU medical nutrition.
  • How to contact the Medical Nutrition Therapy for Prevention Program for help with medical food (formula) and low protein modified low protein food if you’re denied coverage by your insurance or if you are uninsured. This program is available to all residence of Georgia regardless of age or income.

The “Resources” section of this website contains additional links to various important resources.

20161129-anna-parker-videoAnd finally, be sure to check out some personal stories, including this Patient Power video featuring Anna Parker, a PKU adult, describing her life with PKU, including her successful pregnancy.