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Tag: Phenylketonuria

A total of 14 posts are filed under Phenylketonuria
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2014 National PKU Conference to Take Place in Salt Lake City, July 10-13
PKU (Phenylketonuria) is a rare, inherited metabolic disorder that is characterized by the inability of the body to utilize the essential… Continue Reading
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Exclusivity: How The Government Keeps Orphan Drugs in Production
Why did the FDA grant BioMarin this permission, known in bureaucratic lingo as a “six-month pediatric exclusivity extension?”… Continue Reading
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MAPKUF, Inc. First Annual 5k for PKU
The Maryland Alliance of PKU Families will be holding its First Annual 5k run on Saturday, March 22, 2014 to raise awareness of PKU and… Continue Reading
Kevin Alexander, a photojournalist, produced a documentary called “My PKU Life.”
My PKU Life: Traveling to Other Countries to Advocate for PKU and Newborn Screening
Sao Paulo, Brazil is massive. I looked out over the city a few days ago just before my plane landed. And honestly, massive barely describes… Continue Reading
Kevin Alexander, PKU Survivor
Life Changes: Phenylketonuria (PKU) Survivor Shares Loss of “Mama” Essential to PKU Diagnosis and Care
I don’t know when it happened. Maybe it was when I got my first “real” job and the stability that comes with traditional… Continue Reading
Landon has Homocystinuria, a rare genetic metabolic disease that does not allow his body to process the amino acid, Methonine.
Landon Can’t Process Methonine, Which is Found in Protein; Special Diet Controls Homocystinuria
My name is Rachel, and my son Landon has Homocystinuria, a rare genetic metabolic disease in which he can not process the amino acid,… Continue Reading
Kevin Alexander is PKU (Phenylketonuria) Survivor
In Defense of Newborn Screening – Your Tax Dollars Saved My Life!
A Social Justice Issue OK, I’m just going to be real with you. I’ve tried to sit down and write this particular entry numerous… Continue Reading

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