About NPKUA

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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Staff

The NPKUA has a small staff of three including the Executive Director, Development Manager, and Project 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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Committees

The NPKUA committees are made up of community volunteers that provide support in key areas of the organization.

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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 Supporters

Our Corporate Members 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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Grand Power

Are You Grandparents of PKU Children or Young Adults? If you are, we invite you to join Grand Power! The purpose of Grand Power is to reach out to grandparents of children and young adults with PKU in order to provide mutual support, information and a forum for helping with PKU causes

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