ad hoc Nutrition Guidelines Workgroup

ad hoc Nutrition Guideline Workgroup


Fran Rohr, MS, RD

Mary Sowa, MS, RD

Core Group

Rani SIngh (Principal Investigator) Fran Rohr (Co-PI
Amy Cunningham (PKU) Shideh Mofidi (PKU)
Keiko Ueda (PROP) Mary Sowa (VLCAD; Toolkit Dev.)
Sandy Van Calcar (VLCAD) Erin Macleod
Krista Viau Elaina Jurecki
UCD Work Group
Abby Hall Brandi Nichols
Brandy Rawls-Castillo Casey Campbell
Chanel Suares Jessica Kopesky
Jessica Myers Katie Arduini
Laura Nagy Matthew Rasberry
Tope Pedro  


View Workgroup Video

Goals and Objectives:

  • Interface between GMDI and the Southeast Regional Genetics Network (SERN) to support the GMDI/SERN Nutrition Guideline Development Project's objectives:

- Create evidence and consensus-based recommendations for the nutrition management of patients with inherited metabolic disorders.
-Reduce variation in clinical practice and services across medical centers.
-Guide practice decisions that integrate medical and nutrition management


  • Work with SERN to update PKU Nutrition Guideline to include recommendations on managing patients with PKU treated with pegvaliase.
  • Develop PKU Toolkit case studies on pegvaliase management

Updated April 2023

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P.O. Box 1462
Hillsborough, NC 27278