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MACPAD initiated the proposal for National PKU Awareness Month
Dr. Harold Trick is at Kansas State University
Kuvan is an experimental drug from Biomarin. It is a synthetic form of tetrahydrobiopterin, which is an enzyme cofactor that helps to work with phenylalanine hydroxylase to metabolize phenylalanine.
The National PKU Alliance includes local and regional support groups, healthcare providers, researchers, formula companies, pharmaceutical companies, low-protein food vendors, and other individual and corporate partners, united with a mission to improve the lives of individuals and families associated with PKU through research, support, education, and advocacy.
International PKU Teen and Adult Conference
Additionally, weather permitting, an informal trip to The 50th Annual Chicago Air and Water Show downtown is being planned for Sunday, August 17th.
A link to the pdf files for the registration form and the conference agenda is available on the main page of the website pkuworldlink.org. Many of the details regarding the conference are on these pdf's but please feel free to email Sarah Foster at pkuadult@aol.com with questions. |
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