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Mackenzie Guiliano, an adult with PKU, gives tips for organizing meetups in your area with others in the PKU community.
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"For Katy" is now free to view thanks to PKULife.tv's sponsor, PKU Perspectives! Katy is seven years old and has Phenylketonuria (PKU), a rare genetic disease in which the body cannot metabolize protein properly. M...
7.18K Views3 Comments24 Likes
Dietitian Kea Crivelly from Tulane University Medical Center shares some tips for getting the most out of your relationship with your PKU clinic. In the video I mention the article "Newborn Screening 50 Years Later". ...
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PKU Advocate Kevin Alexander announces plans for future content on PKULife.tv.
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Rare Disease Day is an annual worldwide event with one goal in mind: to raise awareness of rare diseases. Please join us on the last day of February as we raise our voices to support those with rare diseases.
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I received an email from the National PKU Alliance with an important announcement. The National PKU Alliance and the Canadian PKU and Allied Disorders have announced the following medical and dietary guidelines for th...
9.19K Views0 Comments56 Likes
Produced in partnership with the National PKU Alliance, this film illustrates the daily challenges of living with PKU... and why staying on the "diet for life" is so essential.
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Highlights from Camp PHEver 2013. Camp PHEver is for children and adolescents with PKU and their siblings. As you can tell from this video, there are MANY activities! For more information, contact Camp PHEver: www.cam...
2.04K Views0 Comments7 Likes
When Michelle Hays' daughter was nearly one year old, she received surprising news: Katy had Phenylketonuria, or PKU. The standard newborn screening test had been overlooked and the diagnosis forever changed their liv...
1.62K Views0 Comments1 Likes
973 Views0 Comments0 Likes