IPAD is a member organization of the National PKU Alliance
The National PKU Alliance is dedicated to improving the lives of individuals and families associated with phenylketonuria, or PKU, through research, support, education and advocacy, while ultimately seeking a cure.
The NPKUA is currently forming through the combined efforts of PKU families from all around the United States. This group has established the following purposes for forming a National PKU Alliance:
To advance research relating to the treatment and/or cure of PKU by raising and distributing funds and establishing a Research Development and Review Committee.
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, and acting as a liaison among local PKU organizations in order to encourage networking and identifying treatment issues and working on possible resolutions.
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, and providing current information to PKU organizations about recent developments in treatments and products.
To advocate for all individuals with PKU by working toward the enactment of PKU friendly legislation, seeking coverage by insurance companies for treatment, and aligning with support groups for related metabolic disorders to promote common goals.
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