The NPKUA is a collaboration of PKU community members joining together as a national voice and supporting local efforts to raise PKU awareness and drive advocacy and education, while ultimately looking for a cure. Use this section to learn more about our staff, board of directors, member organizations, and corporate partners.


Who We Are

The National PKU Alliance works to improve the lives of families and individuals associated with PKU through research, support, education and advocacy, while ultimately seeking a cure. The NPKUA was formed in 2008 by parents, grandparents, and individuals across the country just like you. We are the first national non-profit organization to unite adults, families, regional and statewide PKU organizations, the medical community and PKU-friendly businesses to make a difference in the lives of people with PKU.

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The NPKUA has a small staff of five including the Executive Director, Event and Development Coordinator, PKU Registry Coordinator, Project and Communications Coordinator and Administrative Assistant. They work closely on all matters of the organization and enjoy serving the PKU community.

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Board of Directors

The NPKUA Board is comprised of members of the PKU community including adults with PKU, medical professionals, industry representatives, and parents of children with PKU. The Board Members serve as volunteers and participate in the NPKUA committees. 

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Annual Report

The NPKUA strives to be the champion of individuals and families with PKU and the local organizations that support them. Our Annual Report details how we achieved our goals in 2012 and the many people that supported us along the way.

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Member Organizations

The Member Organizations are our link to the local level.  They lay the groundwork for connecting PKU individuals locally to organize events, volunteer with advocacy efforts, and spread awareness for PKU.  

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Corporate Sponsors

Our Corporate Sponsors help us serve our Mission by providing annual support to achieve initiatives including our national conferences, advocacy efforts, creation of educational materials, and more!

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