Every hour of every day another baby experiences the fate of preventable brain damage.

Worldwide, approximately 35 babies are born each day at risk of developing severe and irreversible brain damage by the age of one due to phenylketonuria (PKU).

This outcome is completely preventable with the aid of universal newborn screening and immediate treatment. Unfortunately this screening exists only in a limited number of developed countries, exposing to 24 babies each day the tragic fate of lifelong brain damage that could otherwise be prevented with the prick of a heel.

In July 2017, a regional and several country-based PKU patient organizations from around the world made history by agreeing to form the first international association for PKU. This global entity will serve as a supportive umbrella organization to regional and national patient organizations and groups in bridging the gap for PKU worldwide.