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.

The purposes of the Alliance are:

1. To advance research relating to the treatment and/or cure of PKU by:

  • raising and distributing funds
  • establishing a Research Development and Review Committee
  • assisting in the creation of databases that will be shared with the international  community
  • providing publicity for products that will benefit individuals with PKU

2.  To support local PKU organizations by:

  • encouraging and assisting in the development of new PKU organizations
  • working with local PKU organizations on fundraising and educational campaigns
  • acting as a liaison among local PKU organizations in order to encourage networking
  • identifying treatment issues and working on possible resolutions
3. To educate others about PKU and the issues faced by individuals and families by:
  • communicating best practices for treatment and other information to health care providers
  • creating communication pieces and other material for use by local PKU organizations and others
  • encouraging children and young adults to stay on diet
  • sponsoring national and international conferences
  • providing current information to PKU organizations about recent developments in treatments and products
4.  To advocate for all individuals with PKU by:
  • working toward the enactment of PKU friendly legislation
  • seeking coverage by insurance companies for treatment
  • aligning with support groups for related metabolic disorders to promote common goals


We invite you to join us in this all important effort to find a cure for PKU and help make lives better. Click HERE to access our membership form.