National PKU Alliance Breaks Ground at First PKU Adult Summit

The PKU Adult Program is a new initiative of the National PKU Alliance (NPKUA) that provides information and support for adults living with PKU. Adults with PKU face many challenges. The program provides a one-stop resource for adults seeking to improve their quality of life. This is the only program composed of a national network of adults with PKU, their families, clinicians, and industry leaders to address the variety of needs of adults with PKU.

During the past several years, a number of different efforts have strived to recognize and place focus on the Adult PKU Community and the unique challenges adults with PKU face. The National PKU Alliance hosted the first ever PKU Adult Summit on November 5-7, 2010 in New Orleans in order to build upon these past initial efforts and provide organization, structure, and direction to all future programs for the Adult PKU Community.

The purpose of the summit was to bring together the various stakeholders in the Adult PKU Community in order to create the first national program of support and assistance for adults living with PKU. The eleven adults with PKU at the summit represented the wide demographic cross section found within the Adult PKU Community including age, gender, geographic location, and current/historical dietary status. In addition to the adults with PKU, the summit included health care professionals treating adult PKU patients, a parent of adult PKU children, and industry leaders who develop and produce products for individuals with PKU.

The group identified four significant factors or barriers to achieving optimal clinical care as goals to focus on:

  1. Clinic Access and Outreach
  2. Maternal PKU
  3. Social Support Opportunities
  4. Insurance Issues and Access to Care

In order to identify potential programs that would address these goals, the summit participants generated numerous ideas through a brainstorming session. The programs that should receive immediate focus for implementation were selected through a ranking process. Small workgroup sessions then made recommendations that outline specific steps towards these programs that can be realistically achieved in a timely manner.

The summit was a groundbreaking and historical event for the Adult PKU Community. The focus and energy created by the meeting will set the tone for future goals and endeavors. If you are an adult with PKU and would like to learn how you can become involved with the NPKUA PKU Adult Program or would like to make a contribution to the NPKUA to support these endeavors, please contact NPKUA’s Executive Director Christine Brown at or 715-437-0477.