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Affiliates

PKU Affiliates and the NPKUA Affiliate Council

Regional support groups are vital to the PKU community because they provide a network of understanding, connection, and resources for individuals and families at a local level. The NPKUA supports regional organizations across the U.S. and works closely with them through the NPKUA Affiliate Council. The NPKUA Affiliate Council hopes to inspire regional PKU organizations to lift one another up as we all work closely to improve the lives of people with PKU while pursuing a cure.

If you are interested in starting a regional Affiliate in your area and/or joining the NPKUA Affiliate Council, reach out to Sarah Gallagher, Director of Community Engagement at sarah@npkua.org.

Regional Organizations

*denotes Affiliate Council Member

Affiliate Council Members

Alabama PKU Foundation*

PKU Alaska

PKU Alaska*
Their mission is to raise more awareness about PKU, and to raise money towards medical research and resources.

Alliance of PKU Families*
They exist to support children and families whose lives are affected by the genetic disease PKU. They are the regional advocacy group for Maryland, Virginia, West Virginia, DC, and Pennsylvania.

Arizona Network for PKU and Allied Disorders*
They are your connection for PKU and Allied Disorders in Arizona. They invite families, friends, co-workers, medical professionals, and people with PKU or an allied disorder to join them in their mission.

California Coalition for PKU & Allied Disorders*
Their mission is to provide support for all families living in California who are involved with or affected by PKU and/or Allied Disorders.

Georgia PKU Connect*
Their mission is to connect PKU families and individuals with the support and resources they need to manage PKU and live healthy, productive lives.

great lakes pku alliance

Great Lakes PKU Alliance*
Their mission is to enrich the lives of people with inherited metabolic disorders and their families by disseminating information, providing supportive activities, and encouraging the exchange of ideas. They serve as the regional advocacy group for Delaware, New Jersey, New York, Ohio and Pennsylvania.

Intermountain PKU & Allied Disorders Association*
They are dedicated to providing support and services to people and families with PKU and allied disorders. They serve as the regional advocacy group for Utah, Idaho, Wyoming, Nevada and Colorado.

Iowa PKU Foundation*
Their mission is to help Iowan PKU families to secure adequate nutritional, educational, and emotional support to enhance their lives.

PKU Organization of Illinois*
They have three key parts to their mission. First, and most important, is to support people and families affected by PKU and Allied Disorders. Second, is to spread information and awareness of PKU and Allied Disorders to our community and the outside community. And third, is constantly raising funds to aid in continued research, medical updates, and changes of PKU and Allied Disorders. As part of their fundraising, they will stay connected with local and national lawmakers to be informed and inform others of the medical changes and necessary events related to PKU and Allied Disorders.

Louisiana Metabolic Disorders Coalition*
They offer support to families dealing with various metabolic and fatty oxidation disorders. Although treatment may be different, the road that we travel is very similar! They can help you navigate that road.

Michigan PKU*
Michigan PKU serves to connect those in our community with PKU and other rare associated disorders by offering support and community events.

Minnesota PKU Foundation*
They are dedicated to support the community and research for a cure.

New England Connection for PKU & Allied Disorders
Their mission is to provide support and services to people with PKU and allied disorders and their families, and to encourage research, and increase public awareness.

PKU Northwest*
They are here to cultivate a sense of community among people with PKU and other inborn errors of metabolism in the Pacific Northwest.

TN PKU logo

Tennessee PKU Foundation*
Their mission is to provide support and education to people and families affected by PKU and similar metabolic disorders, raise community awareness, support PKU research, and promote the overall health and well-being of Tennesseans living with PKU and similar metabolic disorders.