Please note: While our archived programs have great information, they are in an area we are no longer actively maintaining. Since medical progress marches ahead, please see your own doctor and other resources for the latest medical information that’s right for you.

Archived Programs

Powerful PKU Mom Shares Difficult Diagnosis Story

When Michelle Hays' daughter was nearly one year old, she received surprising news: Katy had PKU. She shares her story about how the standard newborn screening test had been overlooked and the diagnosis forever changed their lives.

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The Funding Environment for PKU Research Today

Dr. Michael Gibson, chair of The Clinical Pharmacology Unit at Washington State University, explains the current research funding environment for rare diseases.

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Research Effort to Block Amino Acid Impact on PKU Brain Function

Dr. Michael Gibson, Professor and Chair of The Clinical Pharmacology Unit at Washington State University, explains his novel research effort trying to understand ways to block the transport of the amino acid, Phenylalanine, that has a negative impact on Phenylketonuria (PKU) brain function.

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Take Action on World Rare Disease Day

Kevin Alexander, PKU reporter for Patient Power, encourages everyone to step up and support World Rare Disease Day. He shares some of the important resources available so that you can get involved today.

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Working Globally: Raising Awareness about Newborn Screening and PKU in Brazil

Kevin Alexander, PKU advocate and contributor to Patient Power, shares an update on his recent trip to Curitiba, Brazil to speak at a newborn screening symposium sponsored and share his film, ‘My PKU Life’, with Portuguese subtitles.

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Biggest Healthcare Challenges for PKU Patients

Adam Johnson, President of The Metabolic Disease Foundation, discusses how inconsistent healthcare coverage for PKU foods and treatments affects patients in the United States.

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Kids Learn Life-Long Skills at PKU Camp

PKU reporter Kevin Alexander talks with Debbie Colyer, the first Australian diagnosed with PKU, about a novel PKU summer camp for kids.

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Taking Responsibility for PKU Management

Adam Johnson, President of the Metabolic Disease Foundation, shares how taking responsibility for PKU Management can be an empowering step toward better health for patients.

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Dec. 3: Take Action on National PKU Awareness Day!

December 3, 2012 is National PKU Awareness Day. There are a number of ways you can raise awareness about Phenylketonuria (PKU) in your community. Take a moment to review this Patient Power video and get involved!

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Featured Blog
When Disability Turns into a Source of Energy

By Andrew Schorr


Page last updated on January 25, 2013