ADVOCACY

Important Survey Coming Soon

July 26, 2017
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… (read more)
ADVOCACY

National School Lunch Program – It’s Your Right!

July 24, 2017

Did you know that PKU children are entitled to assistance under the National School Lunch program? It’s true. If your child attends a school that receives funding under the National School Lunch program, the school is required to make accommodations … (read more)

ADVOCACY

Washington Visit: Medical Nutrition Equity Act

May 18, 2017

For all of us impacted by PKU, one of the most significant issue we face is managing the cost of medical foods (formula and other special dietary products) necessary to properly maintain the diet for life.

Right now, each of … (read more)

ADVOCACY

Recent Congressional Activities

December 1, 2016

Georgia PKU Connect would like to extend a big thank you to U.S. Senator Johnny Isakson for sponsoring the 2016 National PKU Awareness Day Resolution – S. Res 627! Senator Isakson also passed the inaugural PKU Awareness Resolution in 2012. … (read more)

ADVOCACY

Georgia PKU Connect Advocacy Success!

November 28, 2016

We are thrilled to share some wonderful news. During the 2015 Georgia Legislative Session a state budget line item passed to setup a medical foods assistance program! This means Georgia patients with PKU or other Inherited Metabolic Disorder (IMD) who … (read more)