Main content Phenylketonuria (PKU)

    Phenylketonuria (PKU)



    Other Places To Get Help

    Organizations

    Children's PKU Network
    3790 Via De La Valle
    Suite 120
    Del Mar, CA  92014
    Phone: 1-800-377-6677
    (858) 509-0767
    Fax: (858) 509-0768
    Email: pkunetwork@aol.com
    Web Address: www.pkunetwork.org
     

    The Children's PKU Network is a nonprofit organization that offers networking services, resources, a hotline, and family support.


    Genetics Home Reference, U.S. National Library of Medicine
    8600 Rockville Pike
    Bethesda, MD  20894
    Phone: 1-888-FIND-NLM (1-888-346-3656)
    Fax: (301) 402-1384
    TDD: 1-800-735-2258
    Web Address: www.ghr.nlm.nih.gov
     

    The Genetics Home Reference provides information on hundreds of genetic conditions. The website has many tools for learning about human genetics and the way genetic changes can cause disease. It also has links to additional resources for people who have genetic conditions and for their families.


    March of Dimes
    1275 Mamaroneck Avenue
    White Plains, NY  10605
    Phone: (914) 997-4488
    Web Address: www.marchofdimes.com
     

    The March of Dimes tries to improve the health of babies by preventing birth defects, premature birth, and early death. March of Dimes supports research, community services, education, and advocacy to save babies' lives. The organization's website has information on premature birth, birth defects, birth defects testing, pregnancy, and prenatal care.


    National Institute of Child Health and Human Development
    P.O. Box 3006
    Rockville, MD  20847
    Phone: 1-800-370-2943
    Fax: 1-866-760-5947 toll-free
    TDD: 1-888-320-6942
    Email: NICHDInformationResourceCenter@mail.nih.gov
    Web Address: www.nichd.nih.gov
     

    The National Institute of Child Health and Human Development (NICHD) is part of the U.S. National Institutes of Health. The NICHD conducts and supports research related to the health of children, adults, and families. NICHD has information on its Web site about many health topics. And you can send specific requests to information specialists.


    National PKU News
    6869 Woodlawn Avenue NE
    Suite 116
    Seattle, WA  98115
    Email: schuett@pkunews.org
    Web Address: www.pkunews.org
     

    This organization creates a newsletter and develops other materials (such as diet information and recipes) for people with phenylketonuria (PKU) and for their families. The website includes treatment and support group information, an email discussion group, and links to related websites.




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