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.
