Patients/Family

Information for Patients and families, coming soon.   Every hour of every day another baby experiences the...

Medical Professionals

Information for Medical Professionals, coming soon.   Every hour of every day another baby experiences the fate...

PKU Organizations

Information for Local PKU Organizations and/or Associations, coming soon.   Every hour of every day another baby...

Policymakers

Information for Policymakers, coming soon.   Every hour of every day another baby experiences the fate of...

About Us

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.

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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.

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Why a global Organization?

The Global Association for PKU has been formed to close gaps in care for people who have PKU across the world. This means improving access to screening, treatment and seeking a cure.

PKU

PKU is a rare genetic disorder in which the body is unable to correctly metabolise an amino acid in protein, phenylalanine. Phenylalanine is a neurotoxin so left untreated people it builds up in the brain causing serious neurological symptoms including seizures and intellectual impairment.

How is PKU diagnosed?

PKU can be simply and quickly diagnosed via the “heel prick” test and if treatment begins immediately most people with this condition will live healthy lives. Currently 65% of babies born in the world miss out on this opportunity.

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2018 NPKUA Conference

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