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
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.
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.
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.