An Educator's Guide to PKU, from the New England Consortium of Metabolic Programs, has been created for teachers to help support children with PKU at school. The guide includes information about the low-Phe diet, new research on the most common learning challenges in PKU and how they become apparent in the classroom, guidance for educators on what they can do to help, and space to add notes about the child with PKU in your life.
The New England Consortium of Metabolic Programs brings together healthcare professionals at all levels involved in identifying and treating individuals with metabolic disorders.
The goals of the Consortium are to disseminate information, collaborate in the development of social support programs and educational materials, support organizations for parents and adults with metabolic disorders, provide training for students in medicine and related fields, jointly develop and conduct research projects, and establish uniform treatment protocols for individuals with metabolic disorders.
The National PKU Alliance is a collaboration of PKU community members joining together as a national voice and supporting local efforts to raise PKU awareness and driving advocacy and education, while ultimately looking for a cure.
This site includes links to help families find clinics, learn about legislation and PKU research, and find resources.
Thanks to Christine Brown, Executive Director, who helped us review the GEMSS website. (Dec. 2011)
The New England Connection for PKU and Allied Disorders (NECPAD) is a non-profit organization that benefits and supports individuals with Phenylketonuria (PKU) and other related disorders and their families. They are linked with the National PKU Alliance, but highlight regional activities and resources.
Thanks to Denise Queally, who helped us review material for this website.
PKU.com is an online resource for 'all things PKU' includes a focus area for teens, adults with PKU, and parents. It offers advice and support, educational information, recipes, and links to resources and discussion forums for individuals with PKU and family members.