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) Dianne Frazier (MSUD)
Keiko Ueda (PROP) Shideh Mofidi (PKU)
Sandy Van Calcar (VLCAD) Mary Sowa (VLCAD; Toolkit Dev.)


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

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For more information about GMDI  or MetabolicPro
please contact us:


P.O. Box 1462
Hillsborough, NC 27278





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